Tuesdays With Maui

Maui and I pose outside a shop with a sign in the window that says Service Dogs ONLY.
Maui is no ordinary Golden Retriever. She has VIP access to any public location, including restaurants and movie theaters. When she's caught sleeping in class, nobody minds.
Maui and I riding in a taxi.
As my Assistance Dog, Maui's job is to accompany me wherever I go. If I drop an object, she picks it up. If I need a door opened, she handles it. Because of her, I am able to lead a more independent life.
Maui in her geisha Halloween costume.
There are many rules Maui has to follow, and these rules can seem unfair to humans. But to Maui, the job is a game. She is rewarded for "tricks" and is allowed to be with her human all day long!
Maui sticking her head between the vertical blinds to see out our living room sliding glass door.
If there are no health or behavioral problems after the first year, the future service dog is moved to Paws with a Cause headquarters where it is matched with a client on the waiting list.
Maui getting her leash crossed with Lulu's while on a walk.
Maui is gentle and responds well to vocal commands, but she also has a lot of energy. This makes her a perfect match for me because I have limited upper body strength and I lead a very active life.
Maui with her front paws resting on the keys of a painted street piano in Denver.
Taking an adorable Golden Retriever everywhere with me has led to many interesting experiences. By sharing them with you, I hope to spread awareness of Service Dogs and issues affecting people with disabilities.

Raising Service Dogs: It's Their Thing

Tuesday, October 26, 2010

Driving to the restaurant, I turned to Nick. "Nick, I'm so excited!" I said.

"Why is that?" he asked, smiling.

"Because, I never thought this day would come. I never thought I would have contact with Maui's foster family. I'm so glad that I can get to know where she came from." I met Dianna, Maui's foster mom, when I gave a presentation to a puppy class at Paws with a Cause headquarters a couple weeks ago. It was now Sunday evening, and Nick and I were on our way to meet the whole family for dinner.

When we arrived, we found our friends sitting at a large table in the back of the dining area. We joined them and made the introductions: Dianna's husband, Dave; her youngest daughter, Mallory; her son, Brandon; and her oldest daughter, Chelsea, who attends college several hours away. (We originally had intended to Skype with Chelsea after dinner, but we had some unfortunate technological malfunctions!)

While we were recounting our reunion at PAWS, Dianna joked that she had contributed to Maui's "ruining" because she couldn't keep from petting her. "I know this one is dying to say hello," she laughed, pointing toward Mallory.

"Oh, absolutely! You can go say hi if you want, no problem," I said, feeling silly that I hadn't offered earlier. I've never seen a girl jump out of her chair so fast. Before I knew it, she was at my side and Maui was positively wriggling with excitement. Her tail wagged rapidly as she stretched out her neck, getting as close as possible. Throughout the evening, family members were popping out of their seats to visit Maui, who could not have anticipated such an eventful meal! Each time, she would sit up as tall as possible, placing a paw on someone's arm or shoulder, her tail swishing back-and-forth, back-and-forth. She could hardly contain herself.

For me, the best part of the evening was being able to get to know the wonderful people who trained this amazing dog, and hearing the charming story of how they came to be foster raisers. Dianna had always had dogs growing up, but Dave didn't have the same experience. Early in their relationship he told her, "I don't know if I could ever live with a dog." Ironically, they were on a walk with Dianna's German Shepherd when he broke the news! But he quickly changed his mind once Dianna made it clear that she intended to always have dogs in her home.

Who would have guessed that years later, when they were married with three young children and a family dog already, he would be the one to suggest they become a foster family for PAWS dogs. After seeing a presentation at work one day, he came home and said, "Honey, this could be kind of fun. They need families to raise puppies. I think we should do it!" At first, Dianna couldn't help thinking, Is he nuts?

Well, maybe a little bit. But 13 foster dogs later, they are still at it. And it has really become a family project for them. Dianna told us that sometimes she wondered if she was doing the right thing, particularly after a conversation with a stranger at the grocery store. One day while she was shopping, a woman approached her and asked her about her dog. Dianna explained that she was training it to be a future service dog, and the woman seemed impressed—until she learned that at the end of the year the dog would be turned in.

"And you put your children through that?" She asked, suddenly indignant. "You actually let your children fall in love with this puppy only to tell them they have to give it away?"

"But it's not like that at all," Dianna told me. "I'm teaching my children the gift of love. If you can love something so much and then give it away to someone you don't even know because you know it's for a good cause, then you've learned something really important. But of course, I started to doubt myself after she said that to me."

Years later, she and the kids were driving away from headquarters after dropping off their most recent successfully raised dog. "We were bawling," she said. "We always do. It's always very difficult because you really do fall in love with them."

Then, one of the girls said from the back seat, "This is so hard. I hate this."

"I know," said Dianna. "This part is always the most difficult. But you know, there is a way to avoid it, to avoid the pain. We could stop raising foster puppies… we don't have to do this."

"What? No!" Her mood changed in an instant. "No way, we can't stop! This is our thing. This is what we do. And we are good at this!"

Dianna reflected on the memory. "That's when I realized, okay, this is really a family thing. This isn't just me anymore. We decided to do this as a family."

I was so inspired by the way they phrased it: "This is our thing." It's so refreshing to see an entire family making sacrifices for but also delighting in service to others. There's something very special about volunteering with an organization like Paws with a Cause to do something so tangible, where you know you can make a difference in at least one person's life. I am very moved by their decision to mobilize around this particular cause and to make it "their thing."

To say thank you and to give them an idea of what Maui has been doing since she left them, I created this video. Below it are pictures from my presentation at PAWS headquarters where I first met Dianna.


Maui retrieving something for me.
Maui shows everyone how she picks up my phone.
Maui looking at the camera.
Then she noticed someone taking her picture in the audience… who is that?
A view down a row of seated audience members, with their future service dogs lying on the ground in front of them. A Golden Retriever with sad eyes lies underneath its owner's legs.
A future service dog lying down, intent on something in its handler's lap.
We were surrounded by future service dogs and amazing people who make it possible.
A future service dog, still a puppy.
A closeup of Maui.
Maui was a star.
Maui greets her first owner with kisses!
Finally, we were able to meet/reunite with Dianna, Maui's foster mom.
Maui receives heartfelt pets while looking at me.
Maui was super excited!
Dianna and I exchange a hug.
Thank you so much, Dianna, and to your family for all your hard work: 13 service dogs and counting!

Healthcare Professionals Should Know

Tuesday, October 19, 2010

In February, my father had a stroke. The doctors said they had never seen and probably would never again see a stroke that had hit like this one; he was lucky to be alive. During the first weeks of his recovery, there was little they could do for him but let his body heal. Thank goodness he was lucid and able to speak, but for days he suffered severe headaches.

One night while I was visiting, a migraine hit. My grandmother, Nick, and I stayed with him, keeping the room dark and quiet while he curled up in a fetal position. I remember how he gripped the side of his bed and tapped his index finger to a frustrated rhythm: anything to refocus his mind away from the pain. He told the nurse that he really needed to cough, but he was afraid because it would make the pain in his head worse. She insisted that he cough, and the three of us left the room to give him some privacy.

I had made the two-and-a-half hour trip from Grand Rapids to Ann Arbor, but I couldn't stay. There was only one more week of school before spring break, but I dreaded going back. At school, I couldn't concentrate. I was so worried. I called him every day. My step grandmother had told me that I could give my name and phone number to the nurses' station on his floor. That way I could call 24 hours a day and speak to a nurse who would be able to update me on his situation. I decided I would do this now before I forgot.

I have a number of strategies for discouraging people from petting Maui. For example, when I get on elevators, I try to put her between me and the wall if there are other people riding. The nurses' station had a tall counter, the kind that is particularly obnoxious for people who use wheelchairs because we can't see over them. I approached it from the side, almost going behind it, so that I could be seen. I positioned myself so that the left side of my wheelchair, Maui's side, was perpendicular to and against the counter, leaving Maui room to stand behind it. For the nurse on duty to pet her, she would have to reach over me.

And that's exactly what she did. With my eyes red and tearful, I asked in a somber voice how I could go about adding myself to the list. But before the question left my lips, she made kissing noises and reached out to Maui over my chair's armrest. Maui, distracted by something down the hall, paid her no attention. She persisted, patting the side of the counter to get Maui to look her way.

"Please don't pet my dog," I said quietly. I felt exhausted. "She's working. I'd like to add myself to the phone list so that I can call in to check up on my father. How do I do that?"

My fatigue, and perhaps disbelief, was the only thing that prevented a full-scale meltdown. Forget not knowing the rules about service dogs—could she even see my face? Did she hear my tone of voice? Isn't she trained to deal with people when they're upset? It's one thing to feel marginalized by the general population when they focus on my dog and not on me; it's quite another to experience this feeling directly from someone who works in the health care profession!

So, figuring this is just something not addressed by the education system, I sent out an e-mail to professors in the various healthcare departments at GVSU offering to speak to their classes about service dog etiquette. Sadly, not one professor responded with an invitation. Switching tactics, I decided to reach out to student organizations. At this year's Campus Life Night, a night when students are invited to come learn about all the student groups at GVSU, I gave my Tuesdays with Maui business card to any organization I could find that had to do with health care: Pre-Med, Pre-Physical Therapy, Pre-Occupational Therapy, Nursing, etc. I told them to contact me if they had any interest in learning more about service dogs.

Several weeks later, the Pre-Physical Therapy Club got in touch with me, and I spoke at the meeting on Tuesday. I was especially excited because physical therapists may be in a position to suggest a service dog to a client, not to mention the high likelihood that they will have patients who have service dogs already. I talked to them about my disability and how Maui helps me, and what other kinds of service dogs are out there. We also talked about service dog etiquette. This doesn't just mean not interacting with service dogs. It also means not focusing only on the dog, remembering to engage its owner as you would any person who doesn't have a dog.

"When I meet someone, I don't want her to only ask me questions about Maui," I told them. "It's okay if we talk about Maui, because she's great, but she's not the only thing that makes my life interesting. Ask me something else. What's my major? Where am I from? Is my hair my natural color, or do I dye it? We can discuss these things, too."

Following my presentation, the group had lots of good questions. I hope that it was a meaningful experience for them, because as I told them after I recounted my experience with my dad's nurse, "I don't want you guys to find yourself in a situation where someone snaps at you for something that you just didn't know. That nurse just didn't know. But as future healthcare professionals, I feel very strongly that you should know about service dogs."

Maybe someday those other student organizations will contact me, as well.

And don't forget to vote for Paws with a Cause in this year's Charity Challenge sponsored by Art Van Furniture!

PAWS receiving a huge check!
PAWS CEO Mike Sapp and PAWS Service Dogs for Children with Autism Program Family, The Lannings, receive a $15,000 grant check on behalf of PAWS from Art Van Founder Art Van Elslander on October 12, 2010. PAWS has an opportunity to win a Grand Prize of $25,000 by accumulating votes at the Art Van Charity Challenge site.

Maui's Family Reunion

October 12, 2010

This summer, on Tuesday, June 29, we launched Tuesdays with Maui. The first post was about an encounter with a woman at the hair salon whose friend had raised service dogs. I asked her to tell her friend thank you for her hard work, explaining that I was not in contact with Maui's family. If they were ever to come across someone with a service dog in public and to describe their involvement with Paws with a Cause, I always hoped that that person would say thank you on my behalf, because it seemed as if I would never have the opportunity to do so myself.

But last week, on Wednesday, October 6, I did just that.

A few months ago, someone at PAWS called and asked if I would be willing to give a presentation to a puppy training class this fall. Always happy to give back in any way that I can, I agreed. I was told that Maui's foster mom, Dianna, might be there, and truthfully, it made me a little nervous.

Once a dog and its client complete their training together, they are officially certified as a team. The family that raised the dog is notified, and it is up to them whether or not their contact information is passed along to the client. Some families might find this to be a positive experience, but for others it understandably makes letting go more difficult. I respected Maui's family's choice, and I was worried that my presentation would make it uncomfortable for Dianna.

Despite my reservations, I enjoyed the chance to tell a room full of foster puppy-raisers how much I appreciate their hard work. "Like any other not-for-profit organization, Paws with a Cause relies heavily on its volunteer base," I said. "But I think volunteering for PAWS is really unique because not only do you donate your time and your money, but you also make an emotional contribution, because saying goodbye to a dog is like saying goodbye to a member of your family. I think the work you do is amazing, and I just want to say thank you so much for your service."

I went on to talk about my disability, how I came to apply for a service dog, and how having Maui has positively impacted my life. The audience of about 15-20 foster families (and 10-15 future service dogs!) had lots of good questions, and we had what I hoped was a good, meaningful discussion about the PAWS client experience.

Then a staff member stood and said, "We actually have something very special here today. Maui was raised by Dianna and her family, who have raised 13 dogs for PAWS." She paused as her eyes began to water. "Dianna, would you like to come and say hello?"

I scanned the room, not yet knowing who Dianna was. Finally, a kind-looking woman on the end of a middle row stood, wiping her eyes profusely. She passed the leash of her current foster puppy to someone else, and as she came around the aisle toward us, Maui's ears perked up attentively. Her tail wagged faster and faster as Dianna came nearer. When she reached us, she laughed and said, "Geez, you would think I birthed this dog myself by the way that I am carrying on! May I pet her?"

"Absolutely," I said, smiling.

Hardly able to contain herself, Maui leaned into Dianna's caresses, soaking up the affection of her very first human. I was reminded of an article I read before Maui and I were placed together, while I was waiting for my application to be processed. It was written by a PAWS client about the first time he met his dog's foster family. He admitted that he was worried that, upon seeing its first owner, his dog would be so consumed with excitement that it would forget about him and ignore him. But in the end, his fears were alleviated when the dog returned to him on its own accord. Would Maui do the same?

Basking in Dianna's attention, Maui stole a glance in my direction. We made eye contact, and she pranced over to me, nudging my hand and keeping her eyes locked on mine. I smiled. "Yes, I know, this is an old friend of yours!" It was as if she were trying to impress upon me the importance of the moment.

"Oh, look at the way she looks at you!" Dianna exclaimed. "That's just the way it should be."

We're all here together! Maui seemed to be saying, as she wagged all the way back to Dianna. I'm so happy!

As we stood there and chatted, I told her, "You and your family have done such a great job with her. I remember when she first came to live with me, how amazing it was, how obvious it was that so much love, dedication, and patience had already gone into her. It absolutely shows, and I'm just so glad to have the opportunity to tell you in person how grateful I am. Thank you so much. She has brought so much good to my life."

We shared a long hug then, and Maui joined us by jumping on my lap between us, right on cue. When we pulled away she said, "You know, when they told me who was presenting, I almost didn't stay. I just didn't know if I could bear it. But I'm so glad that I did. This has just made my day! Oh, I just want to grab my dog and cry, now!" We all got a good laugh out of that.

Before I left, I asked all of the foster puppy raisers to go around the room and introduce themselves, and to tell me how many dogs they had raised for PAWS. Some of Maui's littermates and the other friends were present, making it a true family reunion for her. When everyone had finished, the total for the room was 72 dogs, including several breeder dogs responsible for a number of litters of future service dogs. Now that is something to be proud of!

The next day, Dianna wrote me an e-mail. I was so touched by her words that I would like to share part of it:

Thank you so much for sharing your story and your happiness [at the presentation].  You made REAL all that my family and I intend with every puppy we raise. For a year we love, laugh, and labor with a beautiful creature, hoping and praying that in its future is the chance to be partnered and make a difference in someone's life.  I saw that for real yesterday with you and Maui, in the true joy and love that you two share. For the first time in 11 years, and 13 puppies I truly experienced what Paws works so diligently to put together.  I am blessed to be a part of it.

We are currently making plans to get together with the rest of the family — her husband and children — to catch up and swap Maui stories. I still can't quite believe my good fortune: five months ago, I thought I would never meet the wonderful people who raised Maui. But even though I have been able to say thank you in person, I will continue to say thank you to other puppy-raisers with whom I cross paths. In my opinion, you cannot say it enough to these warm-hearted, courageous, selfless individuals.

What Are You Doing This October?

Tuesday, October 5, 2010

October is here, and with it come two exciting events. The first is Disability Awareness Month, a time to educate ourselves about people with disabilities and to re-examine the notions we might hold about them. For example, did you know that Agatha Christie was dyslexic? Or have you ever considered that being disabled is one of the most flexible minority groups: anyone might find themselves disabled in their lifetime.

Disability Awareness Month of 2010 also has special significance because this year the Americans with Disabilities Act (ADA) celebrated its 20th anniversary. We are truly fortunate to live in a place that sets standards to ensure that its citizens with disabilities live fulfilling, independent lives. I will never forget the story a friend told me about a refugee family from Africa that she worked with while volunteering for a refugee resettlement agency in Florida. The entire family had survived polio, and all were paralyzed from the waist down. In their home country, they lived on the second floor of a building without an elevator. They were forced to crawl up and down the stairs every day. Today, they live with dignity in an accessible, one-story house.

The failure to make society accessible to people with disabilities does not only belong to Africa or other developing regions, which are clearly struggling to meet the needs of their able-bodied population as well. For over a year I tried to make plans to study abroad in France, but in the end I could not because the accessibility obstacles were so great. Buildings with a flight of seven stairs to their entrances did not have alternative ramps, such as the school in Paris where we were to study for the first week. Although they kindly offered to hold my classes in an auxiliary, accessible building, this accommodation would not help me overcome the more entrenched, systematic negligence of the French government to care for its disabled population. Unless I was willing to pay a small fortune, I could not stay in French hotels because there were no codes that stated a hotel must have an accessible room. Only fancy hotels went the extra mile. And accessible bathrooms are not required; so, they're often not there.

And so, I decided not to spend six weeks struggling, begging for France to include me. But I often wonder about the citizens with disabilities of this country which views itself as a progressive leader. I imagine they are resilient and have creative, insightful techniques for carving out an impressively meaningful life in a disappointingly un-accommodating location. For me, reflecting on the Americans with Disabilities Act provides a rare moment of patriotism. (I say "rare" because I believe borders are arbitrary -- aren't we all human? -- and patriotism is, in most of its manifestations, a governmental tool that keeps people from honestly critiquing it when it is most needed. But I digress.) I am truly proud of how far we have come in just 20 years, and I owe a lot to those brave men and women who have cleared the path up to this point. There was a time when people were refused service in restaurants because of their disfigurement, or when people were arrested for chiseling ramps into sidewalks at night.

However, there is still a lot of work to be done. People with disabilities face higher unemployment rates. "Grandfather laws" protect older buildings from having to remodel in order to meet code in the interest of "preserving history"— nevermind the fact that the ADA is an historical moment in itself, and that accommodations made in its name should be celebrated as a part of our history instead of viewed as a defacement of historical property. Living with a disability can be very expensive, as the technology that can lead to many opportunities can also be unaffordable. And, perhaps most importantly, we as a society still struggle with stigma.

Faced with these remaining issues, what can we do? Here are some ways we can start:

Watch Your Language!

We should avoid using terms such as "retarded" or "special ed" when we mean something else, like "unintelligent," "frustrating," or "I don't like you and I really want to insult you right now." We should remember that our words have a connotation that is always there, regardless of our intentions. Even if we are just joking around with our friends, what about the parents who just learned their child has autism and who overhear our careless use of the word "retarded"? What about the highschooler who feels he has to keep his learning disability a secret because the hallways echo with seemingly harmless insults thrown back-and-forth between friends: "You idiot, you need special ed," or, "Did you ride the short bus to school today?" Not only might we be unintentionally hurting someone, but we are also perpetuating the stereotype that cognitive disorders are okay to make fun of, or that people with learning disabilities aren't smart, and this is much more dangerous.

So, in honor of Disability Awareness Month, let's pledge to monitor our choice of words for the month of October. My guess is that by the end of the month you will be cringing when you hear others say "retarded." If you have suggestions for how we can diversify our vocabulary, e-mail me at feedback@tuesdayswithmaui.com. My contributions are "twit," "idgit," and "If you had another brain, you would be a halfwit." I will be keeping a running list of clever insults and posting them!

Volunteer!

For those who have the time, there are lots of volunteer opportunities working with the disabled community. There are camps for people with disabilities which would welcome some new faces as activity facilitators. Or, you could check out your local assisted living centers or nursing homes. People who are homebound would love the opportunity to have coffee and chat with a friend, or watch a movie, or whatever you decide to do. Additionally, counties have at least one Center for Independent Living, which is an amazing resource center for people with disabilities. They provide services such as counseling, financial aid, advocacy resources, assistive technology training, employment preparation, recreational opportunities and other activities, you name it. Like most not-for-profit organizations, they depend on compassionate volunteers. Or, if you've got LOTS of time on your hands, you can raise your own future service dog! While you're there, check out the other awesome volunteer opportunities they have.

Donate!

If you don't have much free time, that's okay! Most not-for-profit organizations will tell you that every contribution makes a difference, even if it's a humble one. Everything costs money, and a financial donation could make a big difference in someone's life.

If you have other ideas on how to get involved this October, or even later down the road, e-mail me at feedback@tuesdayswithmaui.com. This will be a theme in all the posts for this month, so I truly welcome your input!