Category: Stacy's Journal
“Don’t give up…don’t ever give up.” That was the famous quote from Jim Valvano’s famous speech at the ESPYs in March of 1993. He was a famous college basketball player and later coach who was accepting the Arthur Ashe Courage and Humanitarian Award. Jim was courageously battling cancer. Variations of that quote have been used in many different ways in the years since his speech. It’s likely that everyone has been told “not to give up” on more than one occasion in life. Whether it’s for something as simple as a child scoring in a sports game or something as serious as a person with a terminal illness fighting to survive, hearing people say those encouraging words usually ignites a spark of encouragement in the person. The motto, “never give up,” is often heard in the disability community. For many people like myself, it’s a motto we choose to live by.
In an entry a few years ago, I wrote about how comparing our lives is human nature. It’s something we all do without even realizing it. While often comparing is a reaction to jealousy of someone’s circumstances or good fortune, it sometimes can be reflective and can make people realize how well they’re doing despite life’s obstacles. It can help people see what may be possible even when life throws you curveballs.
If you’ve been reading my entries, you probably have figured out that I’m a pretty ambitious person. Thanks to my family, growing up I was taught not to give up. Obviously, there are some things that I want that are just not possible due to my circumstances, but, if there is a chance it could work with accommodations, I was taught to pursue it until it was accomplished. It started early on when I refused to take assignment modifications even though things took me much longer to complete than most of my classmates. It was the same with going to college, finding an apartment, and eventually finding employment. I was taught to keep fighting regardless of how many obstacles get in your way.
Over the years, I’ve witnessed many people with very similar circumstances choose to not to make use of the abilities they have. Often, these people have more physical capabilities than I do (mainly the ability to verbally speak which is huge), but don’t take advantage of them because they don’t have the ambition to jump through the so called “hoops” to get the accommodations they need. When I see this, it’s incredibly frustrating for me because I can’t help but think if I had the abilities they do where I would be. Another example is when people abuse the Social Security system. While I understand that some disabilities and health conditions are hidden, there are a lot of people who claim disability that would be fully capable of working. I can’t say much because I’m obviously on the system; however, I’m doing what I can to help provide for myself. Do I wish I was able to do more? Of course—I’d love nothing more than to be able to make enough income to be able to not be rely on the government programs, but that’s not physically possible for me.
There are many different types of “giving up.” A few years ago, there was a big conversation among the disability community about the book entitled, “Me Before You.” It’s about a man who becomes paralyzed and he wants to commit suicide. However, because he’s physically unable to, someone else would have to assist him. There was discussion about ethics. Should someone be able to assist someone in ending his/her life if the person so desires? That’s a loaded question that has no right answer. Some people with disabilities and health conditions feel like their life isn’t worth living anymore and think it’d be better to end their life. Another example of “giving up” is when, sometimes, older people decide they have lived the life they desire and are ready to move on to the next endeavor. They Intentionally do things not to prolong their lives.
“Never give up” has been my motto for years. I used to close with it when I presented to high school students. It’s extremely hard for me to watch others not take advantage of the abilities they do have. I’m sure some people feel that I don’t take full advantage of my capabilities either; and, I respect and accept that opinion. Knowing that just pushes me to try and accomplish new things. For me, giving up will never be an option. My family and friends have worked too hard to support me in all my endeavors for me to give up on them. Sure, I have days where everything is going wrong and I feel like giving up on everything—I think everyone does, but it’s in those trying times where Jimmy V.’s words really come to fruition. “Don’t give up…don’t ever give up.”
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Ever imagine what a perfect world would look like? A world where everyone would see eye-to-eye, where there’d be no right or wrong, where everyone was treated equal? What would that even look like? In today’s day and age, it’s hard to even fathom. What would a perfect world even look like? Would there be sickness? Would there be disagreements? How would every person be treated? Would there be disability? If so, what would ideal services look like? All of these are deep questions to ponder and there isn’t a right answer.
As I mentioned before, I’m not an overly religious person, but I do believe that there is a reason I survived complications from a traumatic birth. I believe I won’t truly know why until I reach the other side, but there is a reason why I survived. Admittedly, when things get hard due to having cerebral palsy or not having sufficient services to help me live the life I desire, I think about this. Thoughts such as, “why can’t I get the support I need?” or “why do I have to deal with this?” often creep into my head when things aren’t going right. Of course, it does no good to dwell on it, but the fact is that it’s unavoidable.
The Americans with Disabilities Act was signed 32 years ago this month. Laws such as this have made a huge impact on the lives of people living with disabilities, but, yet, many people struggle to get long-term care support services. I’ve written about my care situation many times. While it’s been a few months since I’ve written an entry about it, things haven’t improved. For over six years now, I’ve been hiring my own caregivers through IRIS Self-directed Personal Care. In that time, I’ve experienced the whole spectrum of craziness. Some of the stories you wouldn’t believe. The bottom line is still I can’t get reliable workers. Practically every day, I’m dealing with trying to fill a shift because someone called in. My parents continue to be my saving grace, but this has put a strain on our relationship too. They’re retired and want to travel all over the place as they should be able to do, but, because of my situation, they can’t leave me behind. This has resulted in arguments because they want me to go with them on multiple longer trips (because they can’t risk leaving me hanging if someone calls in or doesn’t show), but I don’t want to be gone that long for multiple reasons. First and foremost, if I’m gone a longer length of time, I risk losing the workers I do have—even with the low wages they make, these college students count on the income. Second, I have a job and commitments I need to fulfill. Yes, most of it is remote, but I have an elaborate computer setup I use at my apartment. When traveling, I have an iPad that I bring along that I can attend meetings on, but I can’t complete what I need to do on it. “I hate being a burden,” I told my mom during one of our recent discussions about this topic. Of course, she told me that I’m not, but I explained that I know I am. This seems to be a frequent conversation these days.
Long-term care services go beyond daily care needs. There are many disparities among things such as housing, transportation, therapy services and medical equipment. After direct care, housing and transportation are the two most talked about disparities in the disability community. There aren’t enough accessible housing options for those with disabilities. If people want to live in a non-segregated setting, finding something accessible is nearly impossible. I’m fortunate to have found my apartment over 10 years ago. While it started out as being a complex for those with disabilities, it has since changed to a complex for people who receive housing assistance—not only people with disabilities. Personally, it’s still not the ideal situation for me because I don’t think of myself that way (in my opinion, I’m only considered to be low income because of the restrictions I have due to my disability), it’s better than nothing. Transportation continues to be another issue for people with disabilities. Simply put, there aren’t enough accessible options available. I’ve had to limit my trips out and about because the only accessible cab in my city is so unreliable. Disparities in treatment options and equipment also continue to be a challenge for many people with disabilities. Limiting the number of therapy sessions one can receive because it’s not considered “rehabilitative” is ridiculous. In my opinion, if therapy helps a person feel better and possibly prevents losing more function, they should be able to continue with therapy. These services are necessary to keep a person as healthy and, in some cases, as independent as possible.
In a perfect world, assuming disability a part of it (we could debate that issue forever and never come to an agreement), care would be something that is readily available to those who need it. Caregivers would get paid adequate wages and receive benefits and training. People who needed care wouldn’t have to fight tooth and nail to get dependable hard-working people to assist them with their basic needs. All long-term care services would be available to those who need them without having to jump through a million hoops to justify you need them.
Unfortunately, we know that a perfect world doesn’t exist and probably will never will. This means that we have to continue to advocate for what we deserve. Often, when we constantly advocate for what we feel what’s right, it feels like we hit dead-ends; like we’ve done all we can, but things aren’t changing. It’s in those challenging times that we have to continue to push ourselves to fight for what’s right. There may never be a perfect world, but knowing our efforts will impact generations that come after us should give us motivation to continue the fight!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Do you get nervous speaking in front of a crowd? Have you ever done something courageous like skydiving? Being courageous and taking risks is something we all do. Granted, being “risky” means something different everyone. Some people are riskier than others. Some people enjoy trying a challenge, while others prefer to stay on the safe side. Obviously, there are thousands of different risks we take every day that we don’t even think twice about. Crossing the street. Riding the bus. Getting out of bed. The list is truly endless. Taking risks is part of life, and can often lead to opportunities the person never dreamed possible. There is also forced risk meaning people have no other option than to try the task at-hand. People with disabilities are no different. We take risks just like everyone else. In fact, we likely take more risks than the average person.
“I couldn’t do what you do,” people often say when they meet my parents and I. While it’s a nice compliant, it likely isn’t true. Yes, admittedly, thanks to the support I receive from friends and family, I’ve turned into a pretty determined person, but, what many people don’t understand, is that I have no choice but to be. I literally depend on the assistance of other people to live. That alone is a huge forced risk that I have no choice in. Regardless of my living situation, being dependent on others is a risk in and of itself.
The biggest and most important risk I’ve ever taken was 19 years ago when I decided to go to UW-Whitewater. Because all of my friends were going away to college, I didn’t even realize how big of a deal it was. To me, it was just the next thing to in life. I don’t even think I thought about it as a risk. Even though, I spent the summer before typing up my care instructions for caregivers I had never even met, I never thought twice about being on my own down there was a risk. It was just the way it was. Sure, when it came time for my mom and sister to leave, I felt emotional and a little scared, but I thought that was pretty normal of an 18-year-old college freshman. My first night care was with a really sweet college student who could tell I was pretty nervous (I’m Facebook friends with her now, and, sometimes I message her and just say thank you for putting me at ease that night). The next morning is when reality hit and I realized “ohhh, ok, maybe this is a bigger deal than I thought.” The aide who was supposed to get me up was over an hour late. Mind you, this is the very first morning I had woken up completely alone. We didn’t even think about having a phone by my bed. I had no idea what to do. I ended up rolling off my bed onto the floor, rolling over to my computer desk where my phone was, pulled the phone cord down, the receiver clunked me on the head, and I was trying to call my parents to see what to do when the aide walked in. Yeah, yikes! It was quite a reality check to say the least. I always tell people that I have no idea what convinced me to stay after that! It wasn’t until after I graduated from college that I began to realize what a giant leap of faith it was to move two hours away from home having never really had other people assist me with all of my needs. By taking that risk and succeeding, I proved to everyone, including myself, that I could live independently if given the right supports. The decision to give it a try at Whitewater has shaped my entire life!
Now, 13 years after graduating college, I find myself taking more risks than I ever have. Hiring my own caregivers is a huge risk. I don’t have backup. If someone doesn’t show up, my parents have to come. It’s a risk for me and a sacrifice for them. We have to trust that these people will show up. Yes, there have been several times in the last six years that people didn’t show up for a shift and we never hear from them again. I also have to risk having people physically take care of me. Unfortunately, the system is so messed up that I can’t train people properly. Technically, in the IRIS program, you’re not supposed to be able to pay people to train (again I think the assumption is that most IRIS participants use family and friends); however, we worked it out so that I am able to compensate people for one shift of training (by using some of my Supportive Home Care hours). This may sound like plenty, but it’s really not. I make do with what I have and have the person jump right in and do the actual care. The other worker is there to guide them. The new person often feels stressed and under pressure, but it’s the only way to do it. Having one training shift, the person is expected to be able to do it alone (this causes a lot of people to quit, but that’s beside the point of this entry). The first shift the person works alone is a huge risk for me. I don’t really know if they can do it alone and I don’t know what they would do if something happened. I have to risk putting my life in the person’s hands.
Being nonverbal adds another layer of risk to almost everything I do. Yes, I use the app on my phone to communicate, but there are many times that I can’t access my phone. When I use the restroom, shower, or transfer anywhere, I can’t use my phone. This probably doesn’t sound like a big deal to most people, but those are the crucial times when the caregivers usually get flustered and need guidance. Unfortunately, as you can imagine, this can be very frustrating for caregiver and I. In fact, several years ago, on a caregiver’s first shift alone, a transfer didn’t go right and I ended up on the bathroom floor. The caregiver flipped out, called my dad (who lives 45 minutes away), and ran out the door crying leaving me on the bathroom floor. Thankfully, she called my dad and we’ve since changed the way we do things, but it just shows the risk I have having to trust other people to assist me.
Living alone is another risk I choose to take. Countless things could happen that could literally leave me stranded for days, but it’s a risk I’m willing to take. Some people with disabilities aren’t comfortable living alone and I totally understand that. Another risk I choose to take is being vulnerable and putting my story out there. Some people aren’t comfortable with sharing so much of their personal life with the world, and that’s perfectly understandable. No doubt it’s risky putting your life out there, but, personally, I’ve come to believe that one of my main purposes in life is to show others what people can do despite their limitations.
All that said, I don’t consider myself a risk taker whatsoever—in fact, far from it. In my family, I’m known as the person who needs a plan and hates when anything changes. I’m not one to jump on anything spontaneous. The major risks I’ve taken in life have been required in order to live the life I desire. Sometimes, risks don’t work out the way we want, but taking risks often ignites a flame in us to make dreams become possibilities!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Ever have that feeling where you feel so selfish for feeling bad for yourself, but, yet, you also are so grateful for what you have? Those thoughts of what should/could/would have been; yet, you know you’re incredibly blessed despite the circumstances you have been given. At the beginning of each May, I have this inner conflict. No, not about whether to cheer for the Cubs or the Brewers, not about whether or not I should go for a stroll because it’s finally nice outside, or not about deciding on summer plans… I have a struggle within myself about Mother’s Day. I can’t say for sure, but I have an inkling I’m not the only woman who may struggle with this. On one hand, I know that I’m incredibly fortunate to have the amazing mom I do, but, yet, on the other hand, that selfish feeling of yearning to be a mother myself often creeps into my head.
In a previous entry I wrote a few years ago, I wrote about how I have the absolute best parents. Both my mom and dad are awesome and basically have dedicated their lives to make my life the best it possibly can be. My dad has modified countless things for me and does whatever he can to make my life better. He’s truly incredible. This is an article about Mother’s Day, but I couldn’t continue without mentioning him. He’s just incredible!
My mom and I have a very special relationship. Hands down, I’m honored to say she’s my best friend. As I’ve mentioned before, very ironically, she was in the special education field before I was even born. I don’t believe it was a coincidence. This has been such a blessing because she already knew about the laws and services available. She also had connections to various resources and people, and, even though she has been retired for a couple years now, she continues to. She knew the potential of what could become, and continues to push me and encourage me to be the best I can possibly be.
Unlike most daughters my age, I still rely on my mom for countless things. Everything from interviewing aides, to staying in the hospital with me, to bringing me to and being my assistant at various events… the list is truly endless. One thing sticks out to me, though. As I age, it’s no secret that I’ve struggled more with my mental and emotional health. My mom is my sounding board. I can’t even begin to count how many times I’ve broke down to her crying or texted her venting about one thing or another. My mom gets the brunt of it. Mom always listens and tries to calm me down. She always reminds me of all that I’ve done and tells me she understands (I believe she’s one of the few people who does truly understand). She’s my rock!
Mother’s Day is a day to thank and celebrate moms. I certainly celebrate and thank my incredible mom, but it’s a day that has become harder and harder for me over the years. Selfishly, in my heart, it’s a day that emphasizes what I want most in life, but will likely never happen. In a past entries, I’ve explained that some people who have disabilities are fully capable and do have children. Due to the severeness of my physical limitations, realistically, it’d be nearly impossible to care for a child. Yes, I could have assistance, but it wouldn’t be fair to the child. In my brain, I’ve come terms with the fact that I’ll likely never become a mother, but, in my heart, it’ll always hurt.
Now that my sister has become a mother and my mom has become a grandmother, it adds another layer to it. I do my best to be happy for them, but, the “what if” thoughts sometimes take over my brain. What if those complications during birth didn’t happen? Would I be a mother? Would I have made my mom a grandma first? What kind of a mom would I be? What would have my kids been like? Thoughts such as those do no good, but I believe they are unavoidable. Sharing that I have those thoughts shows how “normal” I am. Social media also adds another layer. Years ago, I used to write a long post about my mom on Mother’s Day. She loved it as did friends and family. However, a few years ago, I realized that staying off social media during Mother’s Day weekend was better for my mental health. Seeing friends who are mothers post about how lucky they are to be moms to their kids selfishly triggered my emotions. As happy as I am for them, it was just too hard seeing that. I then explained that I wasn’t going to do a long post anymore to my mom and, of course, she said she understood. Is it selfish? Absolutely. Do I feel bad about it? Absolutely. However, it’s one less thing that reminds me of my situation. Again, thankfully, my mom “gets it.”
Women with disabilities aren’t the only ones that might have conflicting feelings about Mother’s Day. Women who struggle with infertility, people who lost their mothers, mothers who lost their child… There are many different scenarios. It’s a day of mixed emotions for many. I’m sure the same can be said about Father’s Day for men yearning to be fathers. While it may be a day of mixed feelings, it’s a time to recognize the mother figures in our life.
Happy Mother’s Day to all of the amazing moms out there—especially mine!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
“Sticks and stones may break my bones, but words will never hurt me.” Yes, I’m aware that I used this quote to start a journal entry a mere two months ago; however, due to recent events at the Oscars, I felt I couldn’t find a better quote to exemplify just how much words do hurt. We all know that the quote is untrue. The Oscars were supposed to be a night of celebration—there was so much to be celebrated—especially for the disability community. The movie, "CODA," won the Academy Award for best picture. It also won the Oscar for best adapted screenplay, and Troy Kutsor became the first deaf actor to win an Academy Award. "CODA," which stands for child of deaf adults, is about a teenager who often interprets for her parents discovers she's a great singer, but finds herself divided between family obligations and pursuing her dreams. The disability representation was amazing, but one joke by host, Chris Rock, about Will Smith’s wife and Will’s extreme overreaction overshadowed the so many positives the night brought.
For those of you who have not heard, Will’s wife, Jada, has a condition called alopecia. It’s a skin condition that often leads to hair loss which is true for Jada—she has no hair. Chris Rock, a comedian, made some snarky joke about her starring in the next G.I. Jane movie, and Will got upset. He walked up on stage, slapped Chris, and started yelling expletives. This was all on live tv. I believe they cut to commercial, so not everyone saw the whole thing. However, it’s all over the media.
Was Will wrong? Definitely. Was Chris wrong? Definitely. They both were. Will’s overreaction was extreme and should and will have consequences. Chris was also wrong, though. Did he know about Jada’s condition? Some reports say he did; others say he didn’t. Regardless, this brings me to my main point of this entry—making jokes about somebody’s appearance or abilities is never okay.
I’ll be honest, I was watching the Oscars, but somehow, missed the whole situation. I went to bed before it was over and didn’t see Will’s acceptance speech when he won best actor where he apologized for his actions. I became aware of the situation when I turned on the news the next morning. When I heard about it, I’m not going to lie, I kind of sided with Will. No, I’m not saying I condone his actions at all, but he was sticking up for his wife who got made fun of for a condition that she can’t help. People with disabilities or health conditions, including myself, can relate to this situation. Many people who look a little different than the norm are often the brunt of jokes.
Several years ago, a fairly new caregiver said something to the effect of, “you know, you’re lucky, you never have to buy new shoes because yours never wear out,” as she was feeding me lunch. She was implying that since I can’t walk, I don’t need to buy new shoes (which couldn’t be farther from the truth, but that’s beside the point). I was taken back by her comment, but didn’t really react to her. Later, I posted it on my Facebook page thinking it would reinforce people to think about what they say to people. I was surprised when several people with similar circumstances thought it was funny. Of course, there were some people who agreed that it was insensitive, but we had an interesting conversation about it on my Facebook page.
I’ve also had people tell me that I’m lucky because I was lucky because I always have a seat. Now, I realize that there probably wasn’t any ill intent; people just weren’t thinking. However, words do hurt. I rarely respond back because I know they didn’t mean it in a harmful way. Whenever people say something like that to me though, it does affect my mental health. Really? Am I lucky to be in a wheelchair? Seriously? I’d gladly trade places with you and or walk if I could. Those are my thoughts when people say that I’m lucky because I always have a seat.
I realize I’m more sensitive about my condition than most. Other people are much stronger than I am and don’t mind when people make degrading jokes about their appearance and abilities. In fact, there are some semi famous comedians with disabilities who use their personal situation as content for their shows. While I understand the concept of using your circumstances as material makes people less uncomfortable, I can’t bring myself to agree with it. Why make fun of your appearance or abilities when we advocate for society not to? Isn’t that a double standard? It doesn’t make sense to me.
I realize that there are many different opinions about this topic, and I respect that. In today’s world where everything is so divided, I would hope people would to accept people for who they are, and if they want to make a joke about someone publicly, at the very least, ask the person beforehand if it’s ok to use. Personally, I love Will Smith as an actor, but I think he’s going to have a really rough road ahead of him. Physically hurting someone on a very public stage erases all the fame he once had. In my opinion, I think both Chris and Will should have taken a minute to apologize to each other (and Jada) at the end of the night. Will probably still would have faced consequences (as he should), but I think that would have done a lot for reputations of the two.
The lesson everyone can learn from all this is that words really can hurt. We knew it before; this situation just emphasized how much they really can. Be mindful of what you say to people. Words DO matter.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Can you do this? Can you do that? How do you do this? How do you do that? Those aren’t questions people normally are asked on a regular basis, or, if they are, they’re meant to help determine something specific such as a medical condition. However, usually, that type of questioning isn’t a regular occurrence in everyday life. It’s not considered normal to have someone ask questions about your abilities and body functions regularly. When you do get asked those questions, you stop and think, “wait, I can’t do that?” or “do I really need help with that?” Fortunately, it only happens to most people when they have their annual physical. However, for people who have disabilities and medical conditions, unintentional interrogation is part of everyday life.
“I guess I never get used to those questions, and we’ll probably do it again Monday,” I said to my parents as we left an almost two-hour physical therapy evaluation for a new wheelchair. Even though, I’ve done many of these types of evaluations in the past, I didn’t know what to expect. I thought we would talk about what functions I need/want for a new wheelchair. We certainly did that, but, because the therapist had never met me before, she had to ask all sorts of questions about my abilities and get personal details about my life. She had to do this, not only so she could make recommendations for my new chair, but she also needed the information to justify things for the insurance company. I’ll be honest--some of the questions she asked made wonder why she needed to know that, but then she’d explain that it was essential to the chair or the insurance would need to know for justification of a certain part or function. She did this questioning in the nicest way, but it made me think about my situation.
Equipment evals are just one example of when people with disabilities are faced with answering uncomfortable, and sometimes, demeaning questions. Often, when you receive long-term care supports, you have to do a functional screen every year that determines if you qualify and how much support you get. With these, the screener asks you about every aspect of your life. Everything from toileting assistance, to how you do your finances, and everything in between. The screener tries to ask the questions in a very positive manner making it less uncomfortable, but, at least for me, I’m mentally and emotionally drained the rest of the day. If you receive personal care assistance, that’s sometimes another annually screen to determine how many hours you qualify for. Not to sound greedy, but, with those screens, people often try to sound as “needy” as possible to qualify for as much support as they can get. Yes, I’m guilty of this, but I’m also very honest. To be clear, I never lie about my abilities, but I’ve learned to paint a picture of my life in terms of what I need assistance with. It’s just one of those things you learn to do after years of experience.
Doctor appointments are another place where those tough questions are asked. I have about six or seven doctors I see. Each time I have an appointment, the same questions are usually asked. Until I a few years ago, I wondered why they asked the same questions every time. I, now, realize why they do. Unfortunately, things change as you age, and although it’s still considered non-progressive, cerebral palsy affects your body more as you age. This is true for care screenings as well—I’ve realized my abilities and needs do change.
The only way people can help you solve problems is by asking questions to get information. It often seems degrading to the person when the questions are very personal, but it has to be done. When I have to answers all these questions, I try to remember that the person is only trying to help me and she/he is really trying to make the situation as least awkward as possible. It sometimes takes a toll on me having to telling people everything wrong with me and share all what I need assistance with, but that’s part of advocacy—sharing one’s experience. I don’t think I’ll ever get used to answering the hard questions. It’s a part of living with a disability I don’t like because I try not to focus on the abilities I don’t have. When people ask me specifically about my abilities, I get uncomfortable and it does often make me sad. I don’t like being reminded of all the things I’m unable to do. As I’ve said in many past entries, my disability is a part of my life, but it doesn’t define the person I am. People, including myself, have to remember that people ask questions to help understand the situation. Most times, people are just trying to get more information to better understand the situation. We all need to remember the common saying, “there’s no such thing as a dumb question.”
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
“Sticks and stones may break my bones, but words will never hurt me.” Many people have heard that saying as kids; however, we know that’s not true. Words hurt. In today’s world, we feel the need to put labels on people more than ever before. Racial labels, economic labels, sexuality labels, political labels… the list goes on and on. There are occasions when labeling people is necessary and helpful, but, more times than not, putting a label on someone causes hurtful feelings and an unpleasant stigma. While belonging to a minority is becoming more common in today’s society, being singled out is never fun.
A quick Google search revealed that one billion people live with a disability in the world. Yet, we are still considered a minority. For years, there has been a debate among the disability community as to how we identify ourselves as persons with disabilities and how we want others to address us when talking about our situation. Years ago, terms such as “handicapped,” “crippled,” “retard,” and “disabled” were used to describe persons with a disability.
In the 90s and early 2000s, the people first language began. It was meant to identify the person before the disability. For example, instead of saying a “disabled person,” you’d say a “person with a disability.” Of course, thankfully, the world, “retard,” has slowly faded away when identifying someone who has an intellectual disability. For a few years, “cognitive disability” was used, but now “intellectual disability” has replaced it.
A few years ago, a new movement started going back to labeling people with disabilities as “disabled.” People with disabilities want to be considered a group in society and want to communicate that disability is a normal part of life. In other words, there’s nothing wrong with being “disabled.” People want the general population to know being “disabled” is okay. Many people with disabilities consider themselves part of a unique minority and are proud of it.
You may have noticed up to this point in the article that I’ve not said “disabled people.” This was on purpose. Personally, I don’t like the term “disabled” used to describe anyone. When I think of the word “disabled,” I think of something that does not work. A disabled car, for an example. What does it portray when we use the same word to describe a broken-down vehicle that we do a person? Yes, I understand that we use adjectives to describe different things all the time, but, to me, “disabled” never should be used to describe a person. Nobody is completely “disabled.” In my opinion, the word “disabled” has a negative connotation in today’s world. Regardless of the circumstances, I believe that every single person that’s born on this earth has the ability to do something.
I’m also not fond of the idea of moving away from people first language. While I understand the idea of being seen as collective group of people in society, I like to think people see the person I am rather than a “disabled person.” Do I identity as a person with a disability? Sure, and obviously it’s a huge part of my life. However, my disability doesn’t define the person I am. When this topic comes up, I think of a quote from a children’s book I read years ago.
“I’m a person who just happens to have a disability, but that doesn’t mean that I’m a disabled person.“
~Golden Daffodils by Marilyn Gould
I understand that some people may think this contradicts being a disability self-advocate, and I can’t argue that they’re wrong; however, being an advocate and preferring a certain label are two different things. I still strongly advocate for people with disabilities; I just prefer to be categorized as someone living with a disability rather than a disabled person.
Many, in fact most, people with disabilities have a different opinion about this issue. I totally respect that. I do understand why people want that commodity of being viewed as a group or culture. There have been lots of discussions about this in my disability Facebook groups, and there are so many different opinions about this. It’s one of those controversial topics that will be debated forever because there are no right answers. Stepping back, it’s unfortunate that we are forced to put labels on everyone for everything. In a perfect world, we’d have no labels and one’s name would be enough, but that’s not the case. We have to respect each other’s preferences and be open to learning about differences. As I always say, we only get one chance to live. We have to remember to make it count not only for ourselves, but for others which means doing our part in respecting each other’s preferences.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
“When a person can make more money flipping burgers at McDonald’s or stocking shelves at Walmart than they can helping people literally live, it’s nearly impossible to find people.” I use something to that effect when I talk about the caregiver shortage. The workforce shortage has elevated to the crisis level in recent years, and now it seems to be even more of a dire situation. The national guard is assisting in some of the state institutions. Nursing homes are turning people away because they don’t have enough staff. People are going without care in their homes. Elderly parents are being forced to take care of their adult children with disabilities. It’s endless. Something has to give, but nobody seems to know what the solution is.
I’ll be honest--I’ve been extremely lucky for about a year and a half with staff. I’ve had a decent core group of girls who have been awesome about helping me cover shifts. They’ve also recruited friends of theirs to work with me. Sure, we’ve had rough patches where shifts weren’t able to be filled, but, for the most part, it’s been really good. Having said that, I’m finding myself scrambling to find people to hire. Right now, most of my workers are college students, and they have clinicals or internships. Then, ultimately, obviously they move on. They’re also typical “college students” and, to no fault of their own (I get it—I once was in college too), socialization often comes before work. As I get older, I notice how prioritizing changes with age. As the age gap grows and I deal with young kids, it’s very apparent that priorities differ with age.
I knew it was coming and knew the drill all too well. I posted on the website where you can post a job without paying (the website only sends you a few applicants when you don’t pay, but most websites won’t even allow you to post unless you pay) and I posted on every Facebook job group I could find. I posted it on my own profile and ask my friends to share it as well. I always have my ad up on Handshake which is the student employment website for UW-Oshkosh, but I haven’t had much luck with that—I’ve been told students don’t look on it very much. With those advertisements up, this time, I’ve literally got three names. One of the people is a past caregiver’s daughter who has just graduated high school and finished the Certified Nursing Assistant (CNA) class and want to get some experience. The other two came from the website and we’re interviewing one of them (if she shows). I probably could use two or three more people, but I can’t find anyone even interested.
This is a common problem across the state. Workers in almost every field are desperately needed. It’s almost like jobs are competing against each other, and, unfortunately, caregiving is often considered “dirty work” which nobody wants to do. For the millions of people like myself who literally rely on caregivers to survive, it causes a serious problem.
Rates increased a little bit at the beginning of the year which definitely helps, but it’s nowhere adequate for what caregivers do. When people can make more money doing something mundane like working as a cashier at a dime store or flipping burgers and a fast-food joint, why would anyone want to make less money taking care of people which often involved very strenuous and disgusting tasks? There have been many discussions about this in the different councils I’m involved in. People also have brought up another great point—not necessarily in my situation at the moment, but, many times, caregivers also have lower economical status and often qualify to receive state benefits as well. There’s nothing wrong with this; however, those people often don’t want to work as many hours as they could in fear of not qualifying for things like BadgerCare. It’s very understandable, but where does that leave people like myself who literally rely on caregivers to survive? It’s a vicious cycle for everyone involved.
I’m hearing about a lot of agencies and nursing homes offering workers just outrageous bonuses to work. In fact, I have a worker who also works at a nursing home back in her home town, and she was telling me about how their paying workers a ridiculous amount to pick up shifts. I explained that while it’s awesome for her, it seems unfair to people in my situation because we literally can’t pay workers more than what the state allows (it’s illegal to pay people additional cash if you receive care through the state). Once people have worked with me for awhile, I try to show my appreciation by dinner every so often or something little like that. However, I understand that while it may be appreciated, it’s not enough to sustain workers.
I’m very blessed with amazing parents who will continue to fill in the gaps for me until they physically are no longer able to. While I have an awesome sister and brother-in-law who will help in the short term when that time comes, I’ll ultimately end up in a care facility. It’s mentally draining to constantly worry about cares. Between that and various medical issues, it has consumed my life in recent years. To the average person who doesn’t know anything about the “system,” when I talk about the caregiver shortage, they often can’t comprehend why it’s such an issue. Most people think that there are agencies that we can call who will automatically provide support. I find myself explaining unfortunately that’s not the case. When I explain the system a little, they are often flabbergasted how things really are.
I don’t have the solution to this massive issue. While I do think adequate pay and maybe some benefits would help, I don’t think that’s the whole issue either. People don’t want to work period. When you have an overall lack of enthusiasm to work and can make more money not working, how can you blame them? It’s going to come to a boiling point sooner than later, and something will be forced to change. I don’t know what that point is (and I’m scared to find out), but something has to give. All we can do is keep advocating and telling our stories about the crisis. It often seems pointless because it’s all we’ve been talking about for years now, but, eventually, something will have to change. I’m beyond ready to find out what that change is!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Richard Branson. Jeff Bezos. Elan Musk. Michael Strahan. Those are just a couple of the famous people who took a trip into space recently. Yes, there have been other people who went who had significant connections to space, but these trips have been funded by well-known billionaires. I had a chance to watch news coverage of the most recent one where the famous football player and news broadcaster, Michael Strahan, went up to space.
Ever since I was young, I have had an interest in outer space. My junior year of high school, I did my multi genera research project on John Glenn, who was a famous astronaut. Watching the coverage of the space launch made me think about what if I wanted to go? Albeit a little scary at first, but I can’t imagine how cool it’d be to be totally weightless. What would happen to my muscles? Now, realistically, that’d probably never be possible because obviously I’m nowhere close to being a millionaire, but I was thinking about the principle of it—what the if a person with a disability could afford it and had the desire to go? I did a quick Google search and found out that it cost over $55 million to go to the space. That’s just for one person and I’m assuming it’s for only a few minutes like the recent trips have been. Right now, very few people in general could afford that, but, as more and more of these trips become reality, the cost will likely eventually decrease. There is already talk going around about a “space tourism industry.” Will people eventually vacation in space? It’s bizarre to think about, but it seems like it’s quickly becoming reality. This brings up a frequent question in the disability community--will it be accessible?
When Bezos went to space this past summer, a meme went around on social media saying something to the effect, “Another billionaire went to space today. If this is possible, why can’t people who use wheelchairs fly without having their wheelchairs wrecked? Why can’t air travel be inclusive? “That wasn’t the exact quote, but the point was that if regular civilians can go to space, we should be able to make air travel inclusive. As a person who has experienced having their wheelchair ruined by the airlines, I completely agree with the statement. A few years ago, I wrote a journal entry about how my chair was ruined on a trip to Vegas. Unfortunately, it happened on the way there, so it kind of wrecked the vacation for my parents and I. Since then, when I fly, I take my manual wheelchair which makes me dependent on others for almost everything.
In my opinion, there’s a bigger issue around this conundrum. Considering we’re in the 21st century, why shouldn’t everything be inclusive? People with disabilities are one of the largest minorities in the world. When inventing new things and opportunities, regardless of what they are, inclusivity should be a factor in development. Yes, I understand this would make things more expensive and complex, but it’s time. I think back to my entry about the Eagle Tower in Door County--that’s a perfect example. It was knocked down due to safety concerns, and, when it was rebuilt, it was made accessible. Did it take longer and cost a lot more? Absolutely, but now a lot more people can enjoy it.
While the Americans with Disabilities Act and other laws have made a lot of things accessible, there is often a sense of frustration when people find out that things will take longer or cost more because they need to be made inclusive for everyone. As a person with a disability, knowing that people are frustrated because they have to wait longer or more money has to be spent to make something accessible, it saddens me. Am I not worth the wait or extra money? Now, of course, there are things that just can’t be made accessible. For those things, alternative options often can be made available. An example of this would be adaptive sports. They obviously aren’t the same as regular sports, but people with various limitations can experience what’s it’s like to play and compete.
Engineers are designing new airplanes and automobiles every day, why can’t we figure out how to get wheelchairs on planes? Yes, I understand it would take many years and billions of dollars to replace all the time airplanes, but, if we can send civilians to space, why can’t we figure out how to make wheelchair accessible cabins? Something doesn’t add up. While I understand the need and desire for extravagant recreational experiences, where does the need for accessibility fit in the priorities of the country? It’s definitely an interesting question to ponder. If we can send civilian tourists to space, we should be able to take flights in airplanes without our vital equipment being damaged. Unfortunately, I don’t foresee anything changing anytime soon. We, as a disability community, have to continue to make sure that we are seen and heard. That’s the only way changes are going to happen.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
“Remember this because I won’t be able to do this again,” I vividly remember my dad saying as he carried me all the way up the Eagle Tower at Peninsula State Park in Door County when I was seven or eight years old. At the time, I certainly didn’t recognize or appreciate the beauty of the view from the top of the tower or how much work it was for my dad to carry me up and down it. Looking back at it now, I realize how hard it must have been, and, really, how unsafe it probably was for him to do that. As I’ve discussed in previous entries, my parents do everything they possibly can to make sure I get to experience as much as possible.
A few years ago, I started hearing about how the Eagle Tower was going to be redone. It had been closed for a while because it was deemed unsafe. It was eventually taken down. There were articles going around on social media about how a group called Friends of Peninsula State Park was trying to raise enough money to build an accessible tower. They raised over $750,000 towards the new tower and canopy. It was started in 2020 and opened in May 2021.
When I first saw the tower, I was simply amazed by the scaffolding and ramp. 
I find it ironic that this new accessible tower is in Door County. Door County isn’t usually known for its accessibility. Many of the shops and restaurants are still inaccessible. I understand the smallness and daintiness of the places is often what makes them unique, but in my opinion, it’s time to make changes so that everyone can enjoy these places. Maybe the tower will influence owners to make necessary changes to their places so that everyone can enjoy them.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.