He Gets It

Bill VoglerThe idea was born on Christmas Eve 2016. I was leaving our church service with a beloved caregiver when Pastor Bill came over to say hello. After giving me a big hug, he said: “Hey Lorraine, next year I want you to do one of the readings for the service. Remind me.”

Bill and I have been friends for more than twenty years. He has supported me through medical procedures, strained relationships, and has handed me tissues when I have cried in his office after people have broken my heart. One of the things I appreciate about Bill is that he always meets me where I am. He listens with compassion when he needs to, offers advice when I ask for it and has a great way of presenting all the perspectives of a situation. This past October, I was sitting in his office telling him some things that had happened in my life recently. Before I left I said: “You wanted me to remind you that you asked me to read one of the readings at the Christmas Eve service this year.”

“That’s right,” he responded with a grin. “Thanks for letting me know.”

“Bill, how are we going to do this logistically?” The altar in the sanctuary is up several steps and I wasn’t sure how we were going to get my wheelchair up there. I think about stuff like that. I have to. Most of the time it doesn’t occur to other people. And even though that makes sense because people tend to spend time thinking about the things that affect them, I have had experiences in the past when plans had to be canceled because accessibility was not considered. Not this time.

“Don’t worry about it. I got it. Just talk to Kristin (his secretary) and practice the reading she gives you.”

I am not usually comfortable trusting other people in terms of accessibility, but I trusted Bill. Over the next few weeks, I touched base with Kristin and Bill numerous times. Every once in a while I couldn’t resist asking the question. “How are we going to do this?”

Bill’s response was always the same. “Don’t worry about it. I got it.”

In the days leading up to Christmas Eve, I had to step out of my comfort zone in various ways. I practiced saying the reading that I was assigned out loud dozens of times. It got to the point that I would swear my service dog was covering her ears. Since I don’t have many regularly scheduled caregivers these days, a friend of mine who is a nurse at the hospital offered to come to my house and help me with having a shower and getting dressed for the service. Then I asked a few people from the congregation if they would mind giving me a ride. Even though neither had done so before, it was coordinated that one couple would take me to the service and another family would bring me home.

When I arrived at the sanctuary and took my usual seat which is the pew in the front row, (It has a cut out which means there is room to accommodate my wheelchair) I noticed that there was a chair on the floor in front of the altar. The chair had a microphone on it. Within a few minutes, pastor Bill was beside me asking me a question. “When it is time for you to read, would you like for me to push you up front or would you rather push yourself?” Since one of the foot pedals on my chair was broken and being wonky, I chose the first option.

At the designated time in the service, Bill left the area where he was sitting with Karen, his wife. He came over to me and pushed my wheelchair in front of the altar so that I could see everyone in attendance. Then he sat in the chair that was there and he held the microphone while I read the third reading. When I was finished, he put the microphone back on the chair, pushed me back to my original seat, gave me a big hug and then returned to where he had been sitting with Karen.

What impressed me most about the whole thing was that it was simply part of the service. Nobody made a big deal about it. Fifteen people were not involved in it. My disability was accommodated exactly in the way it needed to be, and then all of us moved on. The reason the whole thing had me in tears is that given my circumstances recently, I really needed a tangible reminder that there are people in my life who see me as a human being before they see my disability. It was awesome.

Even though I have dozens of people in my life who care about me, I have never been a person to have a huge group of connections. Instead, I have a small group of people that I am very close to. There is Andrea, who has known me for more than two decades and understands how I think. Dale and I met on my second day of classes at Emporia State University and he has been looking out for me ever since. Brandon and his wife Rachel help me dance in all kinds of ways and several former caregivers are among those whom I have truly bonded with.

And there is pastor Bill. He gets it.

 

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Posted in Accessibility, Accommodations, Disabilitiy, disability etiquette, Get To Know Me, inclusion, What some people don't think about | Tagged , | 2 Comments

I Wouldn’t Change It for the World, But…

Amy Wright and coffee shop employees“People with disabilities have been in the shadows for far too long,” Amy Wright said as she was accepting the award for being CNN’s 2017 hero of the year. “But no more!”

In my book, Amy Wright is truly a hero in every sense of the word. She and her husband Ben have four children, and the youngest two, Bitty and Beau have Down Syndrome. In thinking about the future for their children, Mrs. Wright came upon a statistic that she found disturbing. 70% of adults with intellectual disabilities like Down Syndrome and autism and cerebral palsy are unemployed. She and her husband decided that they wanted to be part of the solution instead of part of the problem. So, in January of 2016, they opened Bitty and Beau’s coffee shop in Wilmington, North Carolina. According to a video I watched about the business, every one of the shop’s 40 employees except the two managers (who both have degrees in special education) has some kind of developmental or intellectual disability.

According to the same video, this is the first job for many of the staff who work there so I would be willing to bet there is an exuberance, a contentment in the air that would be hard to find many other places; and everyone who works there wants to do a good job. Who wouldn’t want to be a frequent customer of a place that has an atmosphere like that? One customer said that the coffee shop was “like Starbucks but with a lot of extras.” Another woman said she was “filled up every time she [was] there.” The line is often out the door. And some of the employees have become local celebrities. Many people who come in want to talk to Matt or dance with Trevor. Watching the video, it seems both the customers and the employees are often having a really good time.

“We always say that it’s more than a cup of coffee,” Amy Wright says, “It’s a human rights movement. It has given our employees an opportunity to be respected. It’s given them a chance to shine.” It was through tears that Ms. Wright finished her acceptance speech for the CNN Hero of the Year Award, and she dedicated her last few lines to her kids, Bitty and Beau, who she knew were watching at home. “I wouldn’t change you for the world,” she said, “but I will change the world for you.”

This is the 200th post on Health on Wheels: The Journey to A Better Me. As much as I have said this in the past, when I started this blog, I never imagined that I would be in the place with it that I am now. In the beginning, I just wanted to vent; it was a place where I could express the frustration and the vulnerabilities associated with being a woman with a disability. It was more about me getting out what was within me than it was about other people reading what I had to say.

But the more I wrote and noticed that I was getting some followers, the more I started to think about what I wanted other people to know.  One of the things that Amy Wright says is that she realizes people are scared of what they don’t know. So, she and her family have made the conscious decision to “live out loud” to show others around them exactly what their life is like. Over time, that is the same goal I have had with this blog. My thought is that I can share my various experiences I’ve had and what they mean to me.  If I can communicate that many of my struggles and triumphs are similar to those in the general population, then I can help break down the barrier of fear around people with disabilities and the issues we may face in our society. I want people to know that in most ways, I am just like them.

I have a book coming out in May called “More the Same than Different: A Practical Guide to Respecting and Including People with Disabilities. I agree with Ms. Wright. People tend to be scared of what they don’t know or don’t understand. That is human nature and it is perfectly valid. With this book, I hope to explain what I and many other people with disabilities might need, and the ways that we want to be treated so that we can all focus on our commonalities.

I wouldn’t trade my disability for the world, but I want to change how the world perceives disability. That seems like a good goal to strive for.

200 posts and going strong!

From the bottom of my heart, thank you to everyone who supports this effort.

We are all more the same than different.

 

 

 

 

Posted in Accommodations, cerebral palsy, dance, Disabilitiy, Down Syndrome, inclusion, negative perceptions, overcoming challenges | Tagged , , , , | 7 Comments

Hold the Phone

black rotary phoneEven though I know it wasn’t intentional, the situation freaked me out. During her second shift, after we had gotten me into bed, a new caregiver went to get my phone from my office so that I could have it beside me during the night. In the process, she dropped it in such a way that the phone was toast. Not only could I not make calls on it, but since I couldn’t turn it on, the guy at Verizon told me the next day that none of my contacts could be retrieved. Since that list included 173 names and organizations, I was not happy. For various reasons, some of those phone numbers are ones that I can’t get back. (yes, I know I should have backed everything up a long time ago. It didn’t happen.) But all of that was secondary. The biggest reason for my emotional reaction at the time that the phone was broken was fear. Raw and pure fear. I absolutely hate being scared.
As a wheelchair user who spends a whole lot of time alone in my house, my phone is my lifeline. My safety net. In the event that I fall, or have an accident, or have spasms so severe that I cannot move, calling others is the only way that I can get myself some help. So, when my phone was suddenly out of commission at 10 p.m., with no way to do anything about it until the next morning, I went into panic mode. I didn’t sleep well at all that night. The whole situation only underscored just how vulnerable I am.

I understand that it is not something many other people can relate to. Typically, when an unexpected event happens to most other people, they can go to the door and yell for a neighbor, or get themselves out of the house or to the emergency room. Since I physically am not able to do those things, my having access to a phone is vitally important to my well-being. (And yes, I am getting one of those “I’ve fallen and I can’t get up” gizmos. Just waiting for Medicaid funding to be approved. It could take a while.) It would be safe for me to say that it would not be safe for me to live independently in my own home unless I had access to a phone all the time.

But for me, a phone isn’t only important in emergencies. In my life, a phone has always been an important link to the outside world. Since I don’t drive, I can’t connect with my friends socially as much as I would like to. It’s not easy to meet a group of people downtown for dinner or for a friend and me to decide we want to go to a 7:30 movie at 7:15. Therefore, most of my socialization occurs by talking to people on the phone. When I was in college and long-distance minutes were a thing, my phone bill was usually my biggest expense each month. To me, that was justified because I didn’t do the bar scene and I didn’t go to parties. In a way, talking to friends on the phone was my way of getting out. As friends and former caregivers will tell you, I still like to talk on the phone. It helps me to feel connected, especially when not too many people are around me physically.

More recently, my phone has been the tool I use in my advocacy efforts. At various times throughout this past year, I have called the offices of United States senators and representatives and tried to explain the various ways that programs funded by Medicaid are essential to my livelihood. Essential to my living in the community instead of a nursing home. And that there are a whole lot of people like me in the same situation. Most of the time I had to call repeatedly because the lines were busy or mailboxes were full. I guess many other people had the same idea. And there were certain weeks that I called everyone in Congress that I could, every day. My phone helps me to use my voice and connects me with the people who have the power to make decisions affecting my world. The decision makers might not ever know me personally, but I can make sure they know my opinions, and how their decisions could potentially affect me day-to-day.

And to the people who don’t pay attention or who tell me that my opinions don’t matter; to the people who don’t care much that I am isolated or forget that I have a name and a personality, I say this:

Hold the phone.

 

Posted in Accommodations, Disabilitiy, medical emergencies, What some people don't think about | Tagged , , , , , | 1 Comment

What Gives?

What givesThis time of year is always one of the most reflective for me. Having spent a few weeks before Thanksgiving thinking about all the things I am grateful for, I spend the beginning of December watching the world prepare for Christmas.

Just like when I was their age, the kids in my life are making their lists full of the latest gadgets and toys that they would like to call their own, and reminding their parents that they have been good all year. And because they are kids, Christmas is at least somewhat about what Santa is going to bring them and remembering to leave a carrot out for Rudolf along with the cookies and milk.

Many friends and relatives are searching cookbooks and the internet, planning the menu to prepare the perfect holiday meal, while also trying to coordinate how they are going to see every relative this season. And everyone is busy, trying to get it all done. Last minute presents to buy. One more card to write.

I know myself well enough to know that I don’t do well with stress like that, and for my own sanity, I try not to get caught up in the hustle and bustle of the season, even though people who can manage to pull off all the details like that have my utmost respect.

There is an ongoing struggle in my life that has been with me since I was very young. I haven’t yet figured out how to feel okay about it. Because I am so dependent on other people to meet some of my day to day needs, I worry that all I do is “take” and that none of my relationships are equal. Since that is the case, I spend a fair amount of time thinking about what I can give.

If I was a billionaire, the list might be different. Giving a whole lot of stuff to the people in my life isn’t really an option for me, at least at this point. But I know the value of a smile when I am having a less than stellar day. I know how much I appreciate it when someone looks me in the eye and takes the time to acknowledge what I am saying. I try to do the same. Often, I share with my caregivers specific ways that I feel respected so they hopefully can do those things as they work with people with disabilities in the future. And if a friend happens to be going through a hard time, I do my best to check in and offer to listen. I’ve been known to send lots of emails and messages to people I care about wishing them a good day or saying something that allows them to chuckle. It’s also important to me to say thank you when I have received some help that I have asked for.

The last time I went inside to get food at McDonald’s, I took a few dollars from my purse and bought lunch for a guy who was there. Who knows if he was homeless? I didn’t ask. But he certainly appreciated the gesture. And even though I didn’t know his story, I felt better knowing that whatever he was going through, he wouldn’t be hungry for a few hours. All of that may not be much, but I hope the effort makes a difference to some people.

One of my favorite quotes is from Edward Everett Hale, and I have mentioned it on this blog before. from Edward Everest Hale is an American poet and historian.

I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.

Typically, the first few weeks of December are stressful for most of the people in my world. For my caregivers, classes are winding down and finals are just around the corner. I wouldn’t go through that again even if someone paid me. Other friends of mine have little kids in Christmas pageants and who have classroom Christmas parties at school, as well as the endless baking and wrapping of gifts they do at home. And in years past, all of that stress has meant that sometimes people are harried and a bit short with me. This year, I will slow down and I will have as much patience with them as I can muster. I will do my best not to react negatively.

And as I ask them how I might be able to help I will also ask myself one important question.

What gives?

 

 

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Spring will come

 

Lorraine and Leah by the peach tree

Leah and me under the peach tree a few years ago.

When I went to Home Depot several years back and bought the peach tree that is now planted in my front yard, I was told that it would take many years before that tree would produce edible peaches. I didn’t care. I’ve enjoyed watching it grow, and I know that eventually, there will be lots of fruit to enjoy. The thought of homemade peach cobbler and peach ice cream made with the peaches I picked off my tree makes me smile. And so I don’t mind waiting.

In the spring, there are some pretty blooms on that tree. I have several pictures of myself and my service dog sitting underneath it on a sunny day, the pink flowers dancing overhead. The flowers don’t last too long, and they give way to budding leaves that grow and last all summer. One of my favorite activities on warm summer evenings is to water that tree. There is something so satisfying in knowing that I helped to get the tree what it needed so that it can grow bigger and produce the fruit that it is supposed to produce.

When I looked out the window this morning, I noticed that all the leaves on the tree are gone for the season. We have had some recent nights with some high winds and the leaves just couldn’t hang on. But the tree is still there. And it is much bigger than it used to be. Even when the coming months get cold and snow buries that tree to the point I can hardly see it, the tree will remain, waiting for spring when it can blossom again.

The last few months have been some of the hardest of my life. In my almost 32 years of hiring and managing caregivers, I have never had a season like this one. Some people I’ve hired have gotten sick to the point that they cannot work for me. Others have gotten better jobs with benefits that I just can’t compete with. Some have had school and family issues take up significant amounts of their time. And some have worked for a few weeks and decided that being a caregiver is simply not what they want to be doing right now.

All of it means that I have had to step outside of my comfort zone and do things independently that I never thought I could do. It also means that I have spent a whole lot of time lately alone in my house and in some of that time I have been scared for my safety.

One thing that adds to the issue is that the agency that was supposed to start in the middle of September is still squabbling over paperwork with the company that does payroll in terms of Medicaid funds paying for my caregivers. Without going into all the boring details, both the agency and the payroll company have strict policies that they follow, and those policies are in conflict. While they try to work it all out, I am the one who is living without caregiver support, and because of my balance and spasm issues, I have trouble getting myself into bed. I usually sleep in my wheelchair these days. It’s not the most comfortable thing I have ever done, but I make it work because it is necessary.

Several times per day I remind myself to take the day focusing on one thing at a time, dealing only with what is right in front of me. Otherwise, I would get totally and utterly overwhelmed. I don’t get everything done that I want to these days, but the basics are covered and my service dog is getting everything she needs, including being showered with love and affection, like always. Our bond is what is keeping me grounded.

Just like the peach tree that grows in my front yard, I am on a journey. The wind and the rain are never pleasant, but they help me to grow and hang on. This is all part of the process, and I am aware this is just a bad season. There was a quote I saw on Facebook recently that said: “If a flower dies in a garden, we look at changing the environment, we don’t blame the flower.”

I recently hired two new caregivers and I have three more interviews scheduled for this coming week. I am in the process of rebuilding my caregiver team. I will get to where I want to be. Because I know that when there are several people working for me who understand what I am about, my life just blossoms.

Spring will come again.

And eventually, my life will be sweet.

 

Posted in caregivers, cerebral palsy, Disabilitiy, service dogs | Tagged , , , , | 1 Comment

Radical Gratitude

GratitudeIn the last few weeks, it seems like several bad days have attacked me all at once. I am once again incredibly shorthanded in terms of caregivers, and for various reasons, some other issues have become intense for me. All of it has been hard. And, when bad stuff happens in my life, it is easy for me to feel discouraged and even hopeless sometimes.

I am a big believer that it is okay for anyone to feel what they feel. For me, shoving down an emotion has never been effective. So, I have spent a fair amount of time in the last few days sitting with the overwhelm and letting myself cry it all out. The thing is, overwhelm has never been a comfortable emotion for me to experience, and in the midst of feeling it, I tend not to have good interactions with the people around me. Because of lots of things that have happened in the past, I have learned that when I am in that space, it is best for me to spend time alone so that I can process and work through what I need to. Overwhelm is never a feeling that I want to experience for too long. And I never want to take out on other people the issues that are mine to deal with personally.

Anyone who knows me well knows that in the last few years I have become very interested in personal growth.  I ask myself questions often like:

How can I increase my self-esteem?

How can I have better relationships?

How can I communicate more effectively?

How can I help others around me feel more positive when interacting with me?

How do I become more of the person that I want to be?

I spend a significant amount of time reading books, watching videos, and receiving training in order to get various answers to those questions, and then I take time to sift through the information and figure out which techniques might work best for me.

Since I started this process, I have acquired some tools to help me answer all the questions above. I tap and use affirmations just about every day.

There is another concept that I just heard about recently that really appeals to me. I call it radical gratitude.

The concept is this: It’s pretty hard to be sad and grateful at the same time. It’s difficult to be angry and grateful at the same time. Most people would find it challenging to be overwhelmed and grateful simultaneously. So, when something negative happens in life, take as much time as is needed to be sad or scared or angry or hurt or whatever the case may be. But then, in an effort not to stay stuck in the negativity, make a list of reasons to be grateful.

Now I know that it can feel impossible to make the mind shift to a place of gratitude when you start from a place of negativity. That is where the radical part comes in.

When was the last time you were grateful that you had access to running water all the time?

When was the last time you appreciated you had electricity or a roof over your head or enough food in your refrigerator or for the many pieces of clothing that you have the option to wear? When was the last time you appreciated that you could see or hear or breathe without assistance or communicate freely with other people?

In my case, I asked myself in the last few days if I could be grateful that I had caregivers the caregivers that I did for as long as they were with me, and for the many phenomenal caregivers I have worked with over the years. I also spent some time being grateful for the good people and relationships that I have in my life, even though I feel misunderstood by some of those people in this moment. I have also taken time to pat myself on the back for stepping out of my comfort zone in terms of my independence, in ways I never would have dreamed of if I had a full team of caregivers surrounding me in the last few weeks. I am emotionally stronger now than I would have been if this situation had happened a few years ago.

I’ve heard it said that at any given moment, anyone can find five things that they can be grateful for.

Please understand that it never my intention to minimize anyone else’s pain or to make light of any issue another person may be struggling with.

I just know that in the last few days, when I have shifted my focus to gratitude, even if only for a moment, the heaviness of what I am going through has decreased a bit. And little by little, the overwhelm has given way to various situations feeling slightly more manageable. That is a good thing.

Being grateful during the hardest of times?

I know. It’s radical.

 

 

Posted in Attitudes, changing perspectives, Disabilitiy, Gratitude | Tagged , , , , , | 2 Comments

Life Goes On

life goes onThe show was groundbreaking for its time. Life Goes On premiered on September 12th, 1989 and lasted four seasons, with the last show airing on May 23rd, 1993. The story was about the life of a typical family. What set the show apart was that Corky, the oldest son, had Down Syndrome, and what made the show unique in my opinion, was that the actor that portrayed Corky, has Down Syndrome in real life. The actor’s name is Chris Burke.

I was in the middle of college when the show began, but I usually took a break from studying every week to watch it. What impressed me most was how the show tackled the rawness of living with a disability. Corky struggled with feeling misunderstood, wanting to be one of the crowd, and often with being left behind in terms of what his sister was doing socially.

I could definitely relate, and over time, most of my college friends could too. I had several conversations after the show was over about how Corky had many of the same challenges that other teenagers do. And that was probably the point that the show’s creators wanted to make. I was a big fan of Life Goes On.

A few years later, I had the opportunity to meet Chris Burke at a disability conference held in Lawrence. Being brand new to my job, I was nervous anyway, but the nerves increased significantly when I realized I had the opportunity to meet someone who I considered to be a pretty big star. It happened in the hallway of the conference center, during a break between sessions. Suddenly, I saw him as he was leaning against a wall and I made my way over. “Hello, Mr. Burke,” My wavering voice was brimming with formality. “My name is Lorraine Cannistra. It’s an honor to meet you, sir.”

He didn’t hesitate. “Hi, Lorraine. My name is Chris. I’m glad to meet you as well. Tell me a something about you.”

For the next few minutes, we had a wonderful conversation. I told him about my cerebral palsy, my new job, and my desire to challenge negative perceptions about disabilities. He asked questions about my family and where I attended college as well. He made me laugh as he autographed my conference program, and as I turned to leave, he said: “Hey Lorraine, congratulations on your new job.”

Over the next couple of days, I witnessed him having similar conversations with many other people and he was always a perfect gentleman. Even when he was in the middle of a crowd of people.

Chris Burke had a major impact on me the day that I met him. He reinforced the idea that all of us are similar and that it is beneficial to focus on what brings us together instead of what separates us.

Recently, I watched a video on CBS news about a trend in Iceland. The pregnant women there are encouraged to go through genetic counseling, and if it is determined that the fetus has Down Syndrome, women are given the option to abort. Most of them do so. A nurse in Iceland who assists in abortions who was interviewed said that she did not see what she was doing as murder. Instead, she was eliminating suffering for the baby with Down Syndrome and for the family. As you might imagine, people with Down Syndrome are starting to fight back. Helene Fien, a 21-year-old woman with Down Syndrome and Autism, this is what she said in her testimony to the United Nations:

“A test that checks for Down syndrome is being used to kill all babies with Down syndrome. In Iceland, Denmark, and China, not a single baby with Down syndrome has been born for seven years. Seven years! The goal is to eradicate Down syndrome in the future.” She urged the UN to stop administering the test. See the full testimony below.

http://nation.foxnews.com/2017/05/30/woman-down-syndrome-addresses-united-nations-i-have-right-live

What disturbed me as well is that, according to the same story on CBS news, 67% of babies with Down Syndrome are aborted in the United States as well.

I have often said that I believe in my soul that disability is a difference and not a weakness. If we start to think that it is okay to eradicate any disease or disability on the basis of a perception of suffering, where is it going to stop? Does somebody with a bad back not deserve to live because they might not be able to do the same things or have the same quality of life as someone who doesn’t have a bad back? This is a very dangerous precedent. I cringe to think about where it could lead.

I would be willing to bet that the vast majority of people with disabilities in society will tell you that they simply play the hand that they have been dealt in the best way that they can.

Because, even with a disability, life goes on.

 

Posted in Ableism, changing perspectives, Disabilitiy, Down Syndrome, Getting to know people, Look Beyond, negative perceptions, Television | Tagged , , , | Leave a comment