Every Single Time.

valentine's day heartsHappy Valentine’s Day Eve. Or as I like to call it, Single’s Awareness Day. It used to be that I was among the cynical about this holiday, thinking like so many others that it was an occasion invented by Hallmark cards, Hershey’s chocolate and every flower shop in the country. In fact, I knew some girls in college who would actually base their self-esteem on how many guys called to wish them a happy Valentine’s Day every year. That kind of thing just isn’t my scene. Not even remotely. I don’t see how receiving a gesture of kindness on Valentine’s Day makes that act of kindness more special than it would have been on any other day. But that is just me.

As I have gotten older, my perspective around Valentine’s Day has changed a bit. Now, instead of seeing it solely as a day where some people get to be romantic and sappy, I think of it more as a day when people can express care for one another. Even though I would be among the first to say that I hope that people express their care to the special people in their lives every day, I think sometimes it is especially important for people who are single.

I will admit that there are not as many people in my life as I wish there were. Sometimes it would be great to have somebody to go and have lunch with or who could really take care of me when I am sick. I would love some company when I go strolling on the bike trail, and it would be great to have someone in my life who just does social things with me. Sometimes I wish I had someone to talk to about my day besides caregivers who are being paid by the hour.

Don’t get me wrong, I love my caregivers, and I sincerely appreciate all that they do for me. I could not thrive without their support. It’s just that the conversation is a little different when I talk to them then it is when I have a conversation with someone who is just a friend of mine.

But being single also has its advantages. It means that I can eat chips and salsa or chocolate chip cookies for dinner and nobody will judge me. (Leah, my service dog, and I have an understanding. I don’t tell her that her kibble looks disgusting and she refrains from judging what I eat.) Being single also means that I don’t have to “compromise” with anyone for the last piece of cheesecake in the fridge or deciding what movie I want to watch on Netflix. I can stay up all night reading a book without disturbing anyone. (Leah can sleep through anything except someone opening a jar of peanut butter.) And I like all of that. There are simply some things that I wish I didn’t have to handle on my own all the time. And I am keenly aware that in most situations, I am the only one who will advocate for what I need.

In being single, there is an “aloneness” that is hard to articulate. I don’t mean that every single person is depressed or even wants to be part of a couple. I just know that in my life of singleness, I have had several moments of that “it’s me against the world” feeling. It can be incredibly empowering. Especially when I accomplish something that I set out to do all on my own, the win is something that is uniquely mine, and nobody can take that away from me. That feeling can also nudge me to acknowledge my independence and celebrate achieving something that I couldn’t do yesterday. The other side of that though, is that I don’t have someone who can “take a look” at a moment’s notice when my kitchen faucet starts dripping or a screw or bolt on my wheelchair wears out and needs to be replaced.

So I will spend tomorrow looking at scores of Facebook pictures of hearts and flowers and posts full of romance and affection. And I will enjoy them. Because love around me is positive no matter what form it happens to take.

I would just encourage everyone to also remember tomorrow those in their life who aren’t part of a pair, whatever the reason may be. Make a call. Stop by for an unexpected visit. I can tell you that those kinds of gestures can make a significant difference in my perception of my day.

Every single time.

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Posted in Disabilitiy, Friends, loneliness, Love, Romance, Wheelchair | Tagged , , , , | Leave a comment

Just Ask My Dad

different perspectivesI was working on a writing project when the phone rang.

“Hey, Pop. What’s up?”

“I have a question since I want to be more sensitive to people with disabilities.”

I chuckled. Let me just say that disability etiquette has never been at the tippy top of my 75-year-old father’s list of priorities. Instead, when I was growing up, he laughed about disability often. Comedienne Lily Tomlin did a televised sketch once in the 1970’s. The character she was playing was a cynical old woman who didn’t have much patience for other people. When the woman passed someone using a wheelchair on the sidewalk, her comment was “Why don’t THOSE people just stay home.” My dad repeated the line hundreds of times over the next few decades. And it took him a long time to understand that the word “gimp” could really bother me, even though he was teasing when he said it. So, when he called to ask me a question about sensitivity, I had to hand it to him. That was something I don’t think he would have done a few years ago.

He had been listening to a radio show, and the DJ’s were talking about a documentary that follows three people who are blind in New York City and their efforts to navigate the dating scene. The name of the documentary is Blind Date. My dad was curious if I thought the title was insensitive.

“That depends,” I said. “If the people who are being profiled in the documentary were asked if that was an acceptable title and they were okay with it, then I think that is fine. If, on the other hand, that is the title that the creators of the documentary came up with and their motivation was to be clever in order to boost rating somehow, without asking the subjects of the film, that might be a problem.”

A few years ago, at the height of my wheelchair ballroom dancing days, I was invited to be part of a documentary on TLC, called “The Dancer with Tiny Legs.” The documentary was about a friend of mine, JoAnne Fluke, who has a disability called caudal regression. It means that the lower half of JoAnne’s body did not develop correctly in utero, and as a result, she has very small legs that sit beneath her when she is in her wheelchair. She dances anyway, and the documentary is about her and Brandon, our dance instructor, preparing for and participating in a dance competition.

JoAnne and I used to go to our dance lessons together, so there is a scene in the documentary when I am being helped into the car by one of my caregivers. It’s all pretty innocent and I am keenly aware that I would not be able to live the life that I want to without the support that my caregivers provide me. In the finished documentary, the voiceover when I was being helped into the car said something like, “Even with the severity of her disability, JoAnne has never needed caregivers.” When I first saw it, to me that line came across with a drop of disapproval. It might seem like a small thing, but it bugged me a bit. I got the vibe when I heard that sentence, that having the need for caregivers in my life made me less independent than JoAnne is. Maybe in some ways that might be true, but I do not think that is a universal fact across the board. And I totally respect that many people with disabilities would not have interpreted the scene that showed me getting helped into JoAnne’s car in the same way that I did. My point is that we are all sensitive to different types of issues.

My first book is coming out soon and I could not be more excited. As I have given it to some people to read, I got some interesting feedback. Even though I say several times that the book is only my opinion based on my experiences as a woman with several disabilities, people thought I was sending the message that my way was the only way to do things. And that is not what I want to convey in the least.

So, after some thought, I changed the subtitle. The title of my book is now “More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities.”

Because people have questions about disability issues. And those questions don’t usually have a black or white answer. It depends on the perspective of the person with a disability in any given situation. But the questions will continue to come up. Sometimes in the most unlikely ways, by the most unlikely people.

Just ask my dad.

Posted in communicating respect, Disabilitiy, disability etiquette, Television | Tagged , , , , , , , , , , | 1 Comment

Strategies for Success

steps to successBecause I have never known any different than living with cerebral palsy, I have always gone about my day doing things in the way that they work best for me. To an outsider looking in, they would probably be called accommodations. To me, they are simply the things I have to do to accomplish what I want in my life. I call them the Lorraine Success Strategies. The set up tends to make all the difference.

Most people know that for the last few months, I have been shorthanded on caregivers. Because that has been the case, I find it easier these days to sleep in my clothes. Changing a t-shirt or getting my sweats to go over my shoes is much easier when I am sitting in my wheelchair, and when I am shorthanded, the fewer times I have to change clothes in a day the better. If I have to change one article of clothing, I usually do so while leaning on one of the grab bars which are strategically located in various places throughout my house. Holding on to a grab bar with one hand means that most of my body weight is supported and I can use the other hand to pull clothing on and off as I need to.

I also sleep with my shoes and socks on. If I have to get out of bed in the morning without help, having my shoes on is the only way that I can have enough support to balance and transfer from my bed to my wheelchair. If I don’t have my shoes on when attempting that move, my feet slide on the carpet in my bedroom and I and up having a close personal conversation with the floor. The EMT’s in this town are exceptional, and they always greet me with a smile. But it just wouldn’t be fair to have them come visit me every morning.

Once I am in my wheelchair, I feed Leah, my service dog. Her food is inside the ottoman of a leather chair I used to have. The chair proved to be too slippery to be comfortable, but an ottoman is a good place for Leah’s food because I can reach it there. She gets one scoop of food that I carry in a container over to her bowl and her kibble is topped with her medication. (Leah moves kind of like I do, it’s one of the reasons we belong together. Her medication keeps her joints comfortable.)

While Leah is eating breakfast, I brush my teeth at the kitchen sink. My bathroom is rather small and my power wheelchair is rather big, so I am in there as little as possible. My kitchen is set up in such a way that all the food I eat most often is within my reach, as are my plates, cups, and condiments. The cabinets in my kitchen house the things I don’t use on a regular basis like vases and paper plates and such. Everything that I need in my refrigerator has to be within my reach as well. Frustration levels rise quickly when I can get to my cereal, but my almond milk is out of reach. If I decide to cook, there is a mirror above my stove that hangs at an angle. That way I can see what is happening in a pot on the stove without having to stand and hold myself steady when the stove is too hot to touch.

When I work at my computer, my feet fall off my foot petals frequently. There is a whole lot of spasm in my body that has only gotten worse as I have gotten older. Since I am not able to independently bend my knees at this point, I often use my socks as leverage to get my feet back in place. As a result, there are holes in the tops of most of my socks, because they were the tool used to get my feet to behave.

When my feet are in place and the weather is nice, Leah and I usually go for a stroll on the bike trail. A hands-free leash around my waist allows me to guide my wheelchair while she is walking. A leash that I would have to hold in my hand just would not work for us, I have always needed both hands to navigate my wheelchair whether it was a manual one or not.

After the stroll, we check the mailbox located just outside our door. Most people in our neighboorhood have mailboxes that are some distance away from their house, but after I wrote a letter explaining my situation, the nice people at the post office graciously agreed to bring my mail to me.

These days, caregivers come to my house frequently to help me with things I have trouble doing on my own. My appreciation for that runs deeper than I can express. For the times when I am alone in my house, my day goes better when I utilize Lorraine’s Strategies for Success.

Posted in Accessibility, caregivers, cerebral palsy, Disabilitiy, Independence | Tagged , , , | Leave a comment

In the Spotlight Not the Shadows

spotlightThere has been a debate going on within the disability community for many years now. Should only actors with disabilities play the roles of characters with disabilities or is it okay if actors without disabilities play the role of someone experiencing a disabling condition? And I can kind of see both sides. Obviously, an actor who has the same experience as the character being portrayed is going to bring that experience to the role. But should some actor be denied a role that might be the pinnacle of their career because he or she does not have a disability? Somehow that doesn’t sit quite right with me either. To me, part of acting is making an audience believe something that is not true about the actor in real life. But the debate goes on…

Although I don’t often admit it publicly, my inner nerd loves this time of year. Not just because the weather is warming up and I can see a glimpse of spring when I look into the future, but because the year’s television season is in full swing and there are some good shows to watch on Hulu in the evenings. (I gave up cable many years ago.) In its second season, Speechless is a particular favorite. A family’s oldest son is affected by cerebral palsy, and the show explores the many of those dynamics and their effect on every member of the family and the family as a whole. The cast does so rather brilliantly. Read more about that here. Another surprise this season is The Good Doctor. The character of Dr. Shaun Murphy is a medical resident who has autism and savant tendencies. He also faces real-life challenges and frustrations that would make sense for anyone experiencing those issues.

I’m always a little skeptical when mainstream media includes a character with a disability. Will the whole thing be as cheesy as some oversized nachos? Will the character ooze pity to the point that Tiny Tim has to wear galoshes? Most of the time, in my opinion, when a disability has been represented in the media, the storyline comes from a place of pity instead of power, and that is why I have often watched with low expectations and remained unimpressed. Speechless and The Good Doctor have proven me wrong. Because I like both the shows, I have spent some time thinking about what makes them so successful, and I have come to the conclusion that they do a good job of being authentic. J.J. Demeo makes no secret of the fact that he hates inspiration porn and Dr. Shaun Murphy had an epic meltdown when he felt like other people were trying to make decisions for him.

The thing is that Micah Fowler, who plays J.J. DeMeo on Speechless actually has cerebral palsy and Freddie Highmore, who plays Dr. Shaun Murphy on the Good Doctor is not affected by disability.

Those facts made me think about this debate within the disability community in a new way.

Can actors with disabilities blow people away with their acting skills and do amazing things in character? There is no question. Micah Fowler does that week after week and I don’t think he will stop no matter how many seasons that Speechless remains on the air. I’ve always appreciated the “nitty gritty this is the real stuff of disability ” issues that Speechless brings to the table. I have a feeling that I always will. In my soul, I appreciate that J.J. always calls it like he sees it, even though his character is nonverbal.

Can actors without disabilities, when they are in character, make that character believable enough that the audience thinks that the disability is genuine? When Dr. Shaun Murphy had a meltdown at the end of the midseason finale on the Good Doctor because he felt like other people were trying to control his life, I was sobbing at the end of the scene. The helplessness, the frustration, the “Can’t I make you understand?” feelings were all too real for me because I have experienced them so many times before. There is even a weird sense of betrayal when other people do things for you that you never asked them to do because they “think it is best.” Even though most times people who do that kind of thing do so with good intentions, the dignity they take away can far outweigh the good they were intending. Freddie Highmore’s acting was outstanding when he played that scene perfectly. Every drop of that conflicted emotion came through.

Should only actors with disabilities play characters with disabilities? I don’t think there is a simple answer to that question. What I do know is this. These days disability is portrayed in mainstream media more than it ever has been before. That is a good thing that I believe should continue. The media is not required to represent disability. When writers and producers choose to do so, I think the disability community should support the effort, no matter what disability the actor may or may not have.

Because as long as disability is in the spotlight and not the shadows, giving people a reason to talk about it instead of pushing it aside, I call that a win.

Posted in Ableism, cerebral palsy, Disabilitiy, Diversity, people with disabilities | Tagged , , , , | 1 Comment

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.

Posted in Accessibility, Accommodations, Advocacy, Attitudes, Disabilitiy, Discrimination, inclusion | Tagged , , , | 2 Comments

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!

 

Posted in caregivers, Disabilitiy, Facing a fear, Independence | Tagged , , , , , | Leave a comment