Big Dreams…

MLK JrI’ve been thinking often for the past few days about today being Martin Luther King Day. Dr. King had a dream. That all people would be treated equally regardless of the color of their skin. That there would be no prejudice, no preconceived ideas. That nobody would look at anyone else and have the thought that they were “less than.” He would have been 89 years old today, and he gave his life for the idea that the playing field should be leveled for everyone.

Dr. King is a man that I greatly admire. And for different reasons, we have some of the same values. My advocacy efforts are all about society not considering people with disabilities to be “less than.” I advocate for an accessible and inclusive society because I want the playing field to be equal for everyone.

I have a dream as well. A world without barriers. Both physical and attitudinal.

John, a friend of mine told me a story last night. He and his wife went out to a restaurant over the weekend because they wanted to have a romantic dinner. Kristen is a quadriplegic and she uses a power wheelchair. They had made a reservation. When they got there, they were seated at a table for six, away from all the other tables that were obviously set up for couples. They complained. They wanted a table for two. And although the staff eventually complied, my friends were given a hard time. John said the whole exchange was incredibly awkward. In talking through the experience online, John and I came to the conclusion that society doesn’t expect people with disabilities to be romantic, and in this case, the staff at the restaurant acted accordingly. John and Kisten were forced to ask why their reservation was so much less important than the reservations of other customers. That kind of thing just shouldn’t happen. It’s just not right.

Singing in the choir was something that I did throughout my high school career. For three of those years, I had an instructor that I loved. He was a great guy who considered me to be simply another one of his students. That is the way that I like it. He even put effort into incorporating my wheelchair into some of our performances. That was so much fun. Unfortunately, things were different when I was a senior. That year the choir had a new director and he didn’t like me very much. During the Christmas performance, he put me behind a prop on stage so that nobody could see my wheelchair. When I asked him about it the next day, his response was something like “Well, I wanted the performance to be perfect.” He made sure that I was not included in any of our choir performances for the rest of the year. Looking back, there were a whole lot of “not good enough” moments for me in that class that year.

Throughout high school, my wheelchair also never fit under the tables in the cafeteria. When I am not close enough to a table, I have a hard time eating because most of the time lots of food tends to drop in my lap. It’s messy and embarrassing and makes me feel like I have terrible table manners. As a teenager, that made me really self-conscious about eating in front of anyone. Sometimes at lunch, I pulled my wheelchair next to a large brick pillar in the middle of the cafeteria. It was the only thing my wheelchair could comfortably fit against. But it also sort of put me on display. I didn’t like that. Because there was no better option, most days I ended up eating my lunch in the bathroom. It was just easier all the way around. Nobody made me do that, I just felt like an outsider at the time. There are some days that I wish I could go back to that shy awkward lonely kid and tell her that everything is eventually going to be okay.

For various reasons, I try not to talk very much about those kinds of experiences. They are a tangible reminder that the world hasn’t always seen me as an equal. Sometimes they still don’t. And that hurts. It makes me sad. But it also reminds me that we have a whole lot of work still to do.

So, just like many other people who have a dream of equality that includes a world without barriers for anyone, I will keep on keeping on. Advocating for what I know is right.

Dr. Martin Luther King Jr. will tell you. Big dreams are worth fighting for.

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Posted in Accessibility, Accommodations, Advocacy, Attitudes, Disabilitiy, Discrimination, inclusion | Tagged , , , | Leave a comment

Unexpected Pick Me Up

thank you in sign languageThis past Sunday was less than stellar for me. I had some complications with some former caregivers and the whole caregiver situation that has been so incredibly stressful over the last few months felt like it was pressing against my soul. It was a rare day when I acknowledged that I don’t like always being so dependent on other people to meet my basic needs and that I wish I had more people in my life that have nothing to do with my disability. Some days I find myself wondering if my life is ever going to be significantly different than it is right now. After giving myself a few hours to breathe and be with my emotions I decided that it was time for a distraction. I was getting hungry, and ordering a pizza is not something I usually do. But I love ordering take out. For me, it’s a treat. I justified spending the money by reminding myself that whatever I ordered would probably last me three or four meals. Yeah, that was logical. Grin. I really wanted a pizza.

A Google search for the current deals brought me to the Domino’s website. They had about ten options to choose from, and their special was that you could get any two of those options for $5.99 each. I ordered a medium pizza with their white sauce, sausage and pineapple for the toppings and an order of garlic breadsticks. Perfect. I know. Most people would say that combination is beyond weird. But I like it.

About 45 minutes later, the doorbell rang, and the delivery guy was there with my food. He smiled as he handed me the boxes and I gave him the money I owed. As I turned to put the boxes on the table, I said, “I would like $2 back, please.” It took me a minute to make sure the boxes weren’t going to fall. I didn’t want to eat pizza and breadsticks off the floor. When I turned back to him, I noticed he hadn’t moved, and he was looking at my face pretty intensely. All of the sudden it hit me that he was deaf.

When I was young, I attended a summer camp for kids with disabilities for several years. There were kids there from all walks of life and they had various disabilities. I had no idea at the time that those experiences would be partly what prepared me for my future career. While I was at camp, I learned just enough sign language to be dangerous. So, I asked the driver for change again. But this time, I held up two fingers and made a circular motion on my chest with the palm of my hand. That is the sign for “please” in sign language. His smile could have lit up Times Square on New Year’s Eve. He gave me two one dollar bills. “Thank you,” I said in sign.

“You’re welcome.” He spoke it out loud. He took the time to give my service dog a good petting before he left.

My mind was in overdrive as I filled my mouth with cheesy goodness. I was so impressed. How did this guy convince the manager of the pizza place that he would be successful in a direct service position? What had he done in the past? What was he doing now? Was he in school, and had a job delivering pizzas like a lot of students do? Did he like delivering pizzas? There was so much I wanted to know and I knew it was highly unlikely that my questions would ever be answered.

The experience kept playing in my head as I lay in bed that night as I laid in bed. I wondered if the delivery guy every struggled like I had earlier in the day. Did he worry that people would not understand him? Did customers ever complain because they said he could not communicate well enough? I wondered how many people gave him a hard time and in what context. I have been around enough people with disabilities to know that most of us struggle with those kinds of issues sometimes.

But, the thing is, he was out there. He had accommodated his disability enough that he could do his job, and do it successfully. He kept going. Good for him.

I don’t believe that it was a coincidence that this guy, in particular, delivered my pizza a few days ago. I think God might have known I needed a reminder not to let myself sink too low and to keep going.

Who knew that ordering takeout was going to give me such a pick me up?

Posted in Attitudes, Deaf, Depression, Disabilitiy, Employment, Sign Language | Tagged , , , | Leave a comment

Stay in the Arena

President_Roosevelt“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

Theodore Roosevelt, who is quoted above, also once said that he “did not envy a life of ease.”

Here I sit at the beginning of a new year, and I am dealing with the same difficult situation that I have been dealing with for months. Being shorthanded on caregivers is hard for me in more ways than I can articulate. Spending so much time by myself means that I am in an almost constant state of unease. Will I fall? Lose my balance during a transfer? Will I spill something that is dangerous for my service dog on the floor and not be able to clean it up on my own? What situation will arise that I might not be able to handle? And I determined a long time ago that it is not safe for me to get in and out of the shower unless somebody else is in the house. There is just too much that can go wrong. Every night I literally thank God for my back up caregivers who come every chance that they get. Andrea and Patti are my saving grace right now.

Most of what created this situation is beyond my control. As I have said before, people I’ve hired have gotten very ill, had family problems or anxiety issues, or been offered other jobs that included health benefits. They had to go. Some couldn’t continue working for me when their coursework got too intense. For a few, it was determined early on that being a caregiver was just not the right job for them. That’s okay. In fact, it works out better when I know that sooner rather than later. I just don’t like what that means for me day to day. But it all falls into the “It is what it is” category.

Very well-meaning people who care about me a great deal have suggested that I simply go through an agency to get my caregiving needs met. I’ve tried. I really have. But that has not worked out. Paperwork is holding up the process indefinitely. Besides, that is never going to be my first choice. I know my psyche. And I know how I would feel if someone who I never met and had no say in hiring had to see me naked and vulnerable every time I needed a shower. With some other stranger coming in for the next shift. I might as well be in a nursing home sitting in a corner. No thanks. I don’t care for that visual. Not while I am I still in my 40’s. Just not my style. And my 32 years of hiring and managing caregivers has taught me multitudes about what works for me and what doesn’t. In the last few months, I have tried most of the latter things again. Lo and behold, they still don’t work. That is good information for me to know.

Some days I feel like throwing in the towel. Especially when a new caregiver quits without notice. Again. But that isn’t my style either. I have to be in the arena, continuing to fight, with my face marred with dust and sweat and blood. I am going to make mistakes, (like sometimes hiring the wrong people)  and I am going to have lots of critics. It doesn’t matter. Because the independent, productive life that I want to live is worth fighting for, and in order to make it work, I need a full team of reliable, compassionate caregivers. I have come up short, again and again, but I have had exceptional caregivers before. I know that they are out there. And I will fight with everything inside me to find them so that I can live my best life possible.

I have never really been a fan of New Year’s resolutions. In the past, I have been unrealistic and set my goals too high, and then kicked myself in the butt for not reaching them. Not a good plan. So, this year, instead of setting goals or coming up with a word or a theme for the months ahead, I am going to simply make myself a promise.

I am going to stay in the arena, striving valiantly for a worthy cause. Because in the end, whether I know high achievement or I fail while daring greatly; at least I will never be one of the cold, timid souls who settles and says, “I am okay with less than I deserve.”

I think Theodore Roosevelt might envy my life. And I am okay with that.

My next caregiver interview is on Monday night at 6 p.m.

Happy 2018 everybody!

 

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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.

 

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 , , , , | 1 Comment

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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