Category: Stacy's Journal
By Stacy Ellingen, 2021-09-05
“You’re so lucky to have a place to sit all of the time.” I’ve been told something to that effect more than once. I was told that I’m lucky because I never have to buy new shoes because I never wear out shoes since I don’t walk (which is completely false, I probably go through shoes faster than most people, but that’s beside the point). When people make statements like that, I usually just try to fake laugh it off or ignore it, but really on the inside it bugs me. While some people with disabilities find humor in this, I’m not one of those people--they’re much stronger than me and I give them kudos for being able to laugh it off. Let me be clear, I know people aren’t trying to be mean when they say things, but it irritates me that the thought even crosses their mind. Am I really lucky I have to sit all the time? Don’t they know how lucky they are to be able to stand and walk… even if the conditions aren’t ideal?
My parents and I recently took a trip to Las Vegas. I absolutely love the city, and my parents really trying to get me out there every so often. When we booked our flight, things were looking much better with COVID. Unfortunately, things kind of went backwards lately, but we tried to be really careful. We brought my manual wheelchair because we weren’t going to take anything any chances with the airlines ruining my power chair. We’ve been to Vegas multiple times, and the one thing that struck us this time was the number of people who rented power scooters. There were noticeably more people using scooters out there. While I totally understand that there are hidden disabilities and health conditions that may require a mobility device, it was quite apparent that many people were using them as “toys.” Multiple times, we witnessed people messing around and having races on them. We even saw couples trying to ride on each other’s lap. Yes, we did see some people who clearly needed mobility assistance, but there were a lot of people who appeared to be using them as toys. My parents got irritated because these people were taking up the elevators and clogging up the sidewalks. It irritated me because of the principle of it. I selfishly thought, “why the heck are you using one? Don’t you know how lucky you are to be able to walk?“
Another thing we noticed in Vegas was the number of people who brought their “service dog” everywhere. I’ve written about this before. I understand it’s a fine line because some people do benefit from emotional-support animals, but many people take advantage of being able to use that “excuse.” While having some sort of a vest or identification that the animal wears would expose a person’s personal health issues, it would cut back on the number of animals being “used” as fake support animals. What irritates me is that people take advantage of many of the accommodations that are supposed to help those who really need them.
It goes the other way too—the example that comes to mind is that the lines in the Disney parks. I think the policy has changed now, but when my family went when my sister and I were kids, we were forced to go to the front of lines. While it’s a nice gesture for people with conditions that literally can’t wait in line or people who are terminally ill, we felt very awkward doing it. Why should I get special privileges? We were actually quite embarrassed.
Another example is a few years ago, my mom surprised the family by getting us four accessible tickets for a Green Bay Packer playoff game. She had only gotten them because it was a lottery for accessible tickets for that particular game. My sister and dad are the Packer fans, so I felt like she used my disability to get the tickets. Looking back, I realize it was pretty selfish of me to want to take that experience away from my dad and sister, but I was so mad at her. In the end, it ended up being a moot point because the Packers lost the game before.
There are some “perks” (as some people refer to them as) that I literally couldn’t live without. Long-term care supports are one of those. While I’d love to be able to be off all of the government benefits, that’s just physically not possible. Some people with disabilities can earn enough money to be completely independent and off the so-called system, and that’s awesome. As I unfortunately found out a few months ago, I can only physically do so much without my body flipping out. As frustrating as it is, I have to remind myself that at least I’m doing something to contribute to my needs.
I’m not fully independent in any aspect of life—I never will be. Do I wish I could be and not use any of the specialized equipment I rely on? Of course I do. However, I try my hardest to do what I can. When I see people “take advantage” of specialized equipment or say something irrational, it does affect me. I have to remind myself that they probably don’t realize what they’re doing or saying may be offensive. While I don’t see these situations changing anytime soon, educating people is important. Please take advantage of the abilities you do have. There is a magnitude of specialized technology and equipment to assist people who can’t do various things, but please understand that many people don’t have a choice whether or not to use those things!
***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.
By Stacy Ellingen, 2021-07-30
Gold. Silver. Bronze. Those have been popular words on TV the last few weeks with the summer Olympics taking place in Japan. Yes, because of the pandemic, it’s a little different because no fans are allowed, but the games have brought some much-needed positive excitement to the world. From the many records broken, to the stunning upsets, to the inspiring stories, it’s been refreshing to hear so many positive news stories after over a year and a half of pretty rough times. The Olympics have also highlighted some pressing issues in today’s society.
As I write this, I can think of three different types of Olympics: The “regular” Olympics, the Paralympics, and Special Olympics. I can’t help but think of the movie Murderball when describing the difference between the Paralympics and Special Olympics. The movie is about wheelchair rugby and in the movie the athletes make a not-so-nice comparison between the Paralympics and Special Olympics. It was trying to illustrate that Paralympians and Special Olympians are very different. Often, there’s confusing between the two which can be very degrading for both parties. Admittedly, I don’t know much about Special Olympics, but they are games for people with mostly intellectual disabilities. From my understanding, the athletes train and compete like other athletes, but it’s more about giving the athletes the opportunities to participate just like everyone else. It’s about having the ability to show personal strengths. The competition isn’t as intense. Whereas, in the Paralympics, the competition is just as intense as it is in the regular Olympics and the athletes are considered elite.
In recent years, both Special Olympics and the Paralympics have received more media coverage. The Paralympics begin a few weeks after the regular Olympics end this month. The opening ceremony and a few of the events will be on tv. I watched the opening ceremony of the last Paralympics a few years ago, and it was cool because I actually knew some of the athletes from Whitewater. I recently looked at the roster for this year’s USA Men’s Wheelchair Basketball team and I realized I still know four or five of the players. In fact, I was talking with one of my caregivers about it and I was saying I couldn’t believe some of those guys are still playing—they were playing on the Whitewater team over 15 years ago.
Watching the Olympics makes me wonder if things were different, would I be athletic? Surely, I probably wouldn’t be an Olympian or anything, but I think I would have done some sports. In a previous entry a few years ago, I talked about my love for sports. I absolutely love watching them—especially football and basketball. As I discussed, besides trying a little recreational power soccer a few nights in college, I’ve never played a real sport. Could I have been in Special Olympics or played in a Miracle League (where kids with disabilities are paired with able-bodied buddies to play baseball)? Probably, but I didn’t. It wasn’t on my radar, and, as a kid, I wanted to fit in with my friends. My sister and brother-in-law are involved in myTEAM TRIUMPH. It’s where able-bodied athletes volunteer to help someone with a disability complete a race. The able-bodied people often pull the person with a disability in a bike cart or an inner tube (while swimming). I know my sister would love for me participate in a race, but, for me, I can’t bring myself to do this. Saying this will make me sound incredibly vain, but, as a fully intellectually capable person, I can’t imagine being put it the spotlight for something others did. It’s amazing my sister and brother-in-law are involved in this, but, unfortunately, I don’t see myself ever doing it.
Competition is good for everyone. It’s motivates us to become better at whatever we’re doing. However, as we’ve seen in this Olympics, the pressure to perform can lead to serious mental health issues. Simone Biles, who was supposed to the gold medal favorite in gymnastics, took herself out of two of the competitions citing mental health issues. As unfortunate as it was, it has brought so much awareness to the issue. Social media has blown up with posts about this. While there are some negative posts out there about how she left her team hanging, most of the posts I’ve seen have fully embraced and supported Simone for recognizing it and stepping away. For many people, including myself, seeing her step away made them realize that it’s ok not to be ok. Besides the pandemic, I think it’ll be the biggest thing remembered from this Olympics. It’s amazing to see how much impact one athlete can have on the world.
Athletics give us great entertainment. Sports have a funny way of pushing people to their limit, but also bringing people together. They make people realize what they are capable of and how far they can go. They also help us realize that humans are humans, and nobody is perfect. Sports teach us what’s important in life!
***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.
By Stacy Ellingen, 2021-06-28
Whether it’s waiting for ticket sales to open for a concert for your favorite band, waiting for the clock to turn midnight to celebrate your birthday, or another scenario, almost everyone has experienced watching the clock to turn a specific time for one reason or another. When we have to wait until an exact time for something, time often goes by really slowly. Regardless of rather it’s for a good or bad thing, people get anxious about waiting. Often, the same feeling occurs when people are under a certain time limit to complete a task. One often feels pressure or anxiety when being timed to complete tasks. For people with disabilities who need assistance with basic needs, this feeling just got amplified thanks to a new federal mandate.
For years, the words “Electronic Visit Verification” (EVV) have been floating around the disability community. It’s basically where in-home caregivers have to log in and out for each shift. To the average person, this doesn’t sound like a big issue. Employees have to sign in and out at lot of jobs, right? What is the problem with that? Well, let me try to explain.
In long-term care programs, participants usually get a certain amount of care hours based on annual assessments. There are different types of care hours people qualify for—like Personal Care, Supportive Home Care, and Respite Care. I have Personal Care and Supportive Home Care. I have a certain number of each that I’m allotted weekly/monthly. Some people can just use the hours on whims notice. In my situation, it’s best to have a standing schedule of care. I have the different hours divided up each day and it usually doesn’t vary too much. I’ve been hiring and scheduling all of my own caregivers for over five years now, and I’m really glad I’ve done it this way all along--especially with this new mandate. If you don’t use the hours, you lose them. Generally, you want to use all the hours you can, so you don’t risk having your amount cut due to lack of use. I’ve learned it’s much more difficult to increase your hours than it is to have them cut back.
For the past five years, I’ve had certain scheduled shift times. My workers would enter the shifts into the portal, submit it at the end of each time period, and then I would approve it. Since my shift times stay the same, it worked pretty well--everyone knew exactly what to put. When I started hearing about EVV a few years ago, I knew it’d be a big hassle, and I was right.
My Fiscal Employment Agency (FEA) chose not to use the software application that the state came out with. Instead, they had to get the software that they were going to use approved by the state. The Department of Health sent out a large packet of information about their system back in November which caused mass confusion. I think all of the FEAs and IRIS consultants got bombarded with questions by anxious and confused participants. At the time, my FEA told us to not worry about it and more information would be coming. For months, I had been hearing people who have other FEAs starting to use EVV. I thought it was a little weird my FEA seemed to be so far behind, but I certainly wasn’t going to question it. In January, I started seeing advertisements to sign up for training through the FEA. I signed up for a session, but as it turned out, they were doing it over the phone (instead of on the computer) at the time, so I couldn’t participate. I had my mom do the training, so she could fill me in. At the time, their software system hadn’t been approved, so the training was pretty useless. In May, I started receiving emails saying to look for information about EVV coming soon. I told my workers to start watching their inboxes for information about it. A few weeks ago, some of my workers and I received an email about how to set it up, but some of my workers didn’t receive it. The email was very vague and didn’t have a start date. I assumed more information would be coming, so I didn’t start. About a week or so ago, I received an email from the FEA asking why there has been no shifts logged in the EVV system. I replied saying that only a couple of my workers received an email and there wasn’t a start date. That got the ball rolling. They asked for email addresses for the people who didn’t get it, and said we should start as soon as possible. They explained that it is a “soft launch” meaning that the time sheets will still be used for payment while the kinks get worked out of this new system. Eventually, though, this will replace timesheets.
With the new EVV system, workers download an app on their phone to sign in/out of every shift. If a worker doesn’t have a smart phone or doesn’t want to download the app, there are other options to log in/out (such as a number to call or even a device the participant can request to time in/out). Luckily, my workers are young and tech savvy, so using the app isn’t a big deal. However, it’s a real pain having to log in/out at an exact time. I’ve always had a pretty lenient relationship with my workers. If we got done with everything I need done a few minutes early, I’d let them leave and chart the full shift on the timesheet; on the flip side, if I needed a few minutes more of assistance, they’d stay, but only put the regular amount of time on the timesheet. That all came to a screeching halt when we started EVV.
I now have five alarms set on my phone each day. Each one is a reminder to sign in or out of a shift. My night shift is split into two separate types of care, so, now, at 5:30 each night, we have to stop what we’re doing and the worker has to sign out of one shift and into another. It is ridiculous! Typical people don’t live “on the clock,” but that’s essentially what this is making people in my circumstances have to do. It makes me so angry! I understand that it’s meant to prevent fraud, but it’s also not fair to the participants. I have to literally keep my eye on the on time 24/7 now. At least, for now, the app just asks people to check the tasks for each shift rather than having to select tasks for specific minutes in the shift. If that ever happens, it’s going to be even more of a chaotic mess. Fingers crossed that doesn’t happen!
Fortunately, I’m in the IRIS program, so I don’t have to worry about location. Unlike other long-term care programs, participants in IRIS can receive cares outside of my home. Thank goodness! For those who are in other programs can only receive personal care in their home. The app does track location, but, as long as I’m with the worker (obviously), location shouldn’t matter. I consider myself fortunate in that aspect.
Most people don’t live life on the clock, but that’s what many people like myself are being forced to do. I think it’s obvious that I’m not happy about this new mandate, but it is what it is. I have no choice but to embrace this new system, and figure out what is going to work best for me. Is it fair that I’m on the clock all day everyday? Absolutely not, but the reality is life isn’t fair for anyone!
***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.
By Stacy Ellingen, 2021-06-06
Ever wonder when enough is enough? Whether it’s referring to a person eating too much for dinner, a parent dealing with an unruly child, picking up overtime at work, or another scenario, almost everyone has had to say “enough is enough.” We all deal with stress and anxiety differently. Some people headaches, some feel the need to exercise more, others eat more. It varies person-to-person. Whatever people do to “de-stress” usually requires them to get away from the situation at-hand. There are many different ways to release stress. Ideally, whatever stress relief activity people use, once they do it, they can go back and continue handling the circumstances. Stress is part of life. We all have it. It’s part of life. People with disabilities are no different—in fact, in many ways, I feel like we have more stress than the average person.
If you’ve read my past entries, you probably know that kind of a go-getter by nature. When my parents told me that the insurance company deemed me “unemployable” at the age of four (without even meeting me), I knew I had to prove them wrong. I’ve done that about four times in my life between mentoring, my different work experiences, and being a business owner where I’m independently contracted with InControl Wisconsin. When someone doubts my abilities, I like to prove them wrong over and over again. In early March, I was hired to do another part-time advocacy job by a different disability organization. It was very part-time, they were more than willing to accommodate my needs, and I absolutely loved the work I was doing. It was about double the hours I currently worked. It was all virtual and I thought I could easily handle doing both jobs. Boy, was I wrong. I lasted about two-and-a-half months before I made the difficult decision to resign. In that time, I had two trips to the ER, an emergency surgery, a week-long hospital stay, and countless trips to the doctor. During all of this, I was trying to do my best with keeping up with both positions all while trying to manage my caregivers, and just keeping up with normal life. I think part of the problem was that when I have things to do, I work nonstop until I get them finished. I don’t take time to relax until I have everything done. That’s just the way I am, so I was working on stuff nonstop for weeks on end without taking time for myself.
It was my last visit to the ER that made me realize I needed to slow down. I went in because my spasticity had been so bad for so many weeks that my neurosurgeon (who I saw earlier in the day) wanted me to get scans done because he thought maybe I had an infection or something. We were all trying to figure out why my spasticity was so bad. In the ER, they literally had to sedate me because my muscles were so bad. I had a full workup done and every single thing came back normal. Normal is a great thing, but we needed to figure out what was causing all of the issues. I slept for almost 18 hours straight due to the medication they gave me. The next day, when I was finally alert, my mom told me that everything came back fine. I then made the decision that I needed to step down from my new job. I know my parents were waiting for to come to that realization. They didn’t want to tell me that I should, but they wanted me to realize that I couldn’t handle that much.
I won’t sugarcoat it’s been difficult coming to terms with the fact that my body can’t handle very much stress. My mind wants to be able to do so much more, but my body says, “sorry, no way!” I’m learning that I need to let my body guide me. I have said “no” to more things in the last few weeks then I ever have before. It’s certainly not easy, but my health has to take priority.
It’s more than just saying no to things. In my situation, it’s also about physically being comfortable. The other day, when my mom and I were on the way to another medical appointment, I told her about how I was planning to wear a dress with tennis shoes to our big 4th of July party. This won’t make any sense to most people, but when my feet are fully protected by wearing tennis shoes, my whole body is calmer. I have lots of dressy shoes and sandals I’ve worn to wedding and special occasions, but my body always is more tense when I wear them. I was telling mom how people will probably laugh at me at the party, but I don’t care—being comfortable is more important. She agreed.
Another example of enjoying life in the moment is getting what you want when you want it. I can’t go into financial details for obvious reasons, but I’m learning that I should get what I want and not wait for the “right time.” People with disabilities who receive government benefits are really limited financially. We can’t really save too much money (yes, I have an ABLE account, but it has so many stipulations that I have to be really careful); if we go over a certain amount in our account, we lose things like insurance and long-term care services. Many of us would never be able to afford to pay out of pocket for insurance and care services, so we have to very vigilante about our finances. I’m essentially learning that I need to spend money on things that I want rather than waiting for another time.
At age 36, do I feel like a 90-year-old? Yes, in so many ways. As I’ve said in many previous entries, Cerebral Palsy is considered a non-progressive condition; however, as we get older, our bodies seem to age faster than the average person. For me, slowing down and reducing my responsibilities has seemed to help me physically quite a bit. I still have problems with my spasticity from time to time, but I’m not stressed if I need to take the time to relax. I know that I have time to do what needs to be done. I don’t have to rush anything.
How do you know when enough is enough? That’s a good question. I’m still trying to figure that out. Personally, I’m learning that I have to let my body be my guide. If I start feeling too much stress (of any kind), my muscles will let me know. People need to listen to their body. Nobody else is going know when “enough is enough” for another person. Life is too short. Relax. Take time for yourself. Be comfortable. We only get one chance to live. Enjoy it!
By Stacy Ellingen, 2021-05-03
When was the last time you thought about how much time it takes you to do a simple task? Like putting a Cheeto in your mouth? Or putting your clothes on for the day? Most people don’t even think about how long it takes them complete routine simple tasks. Simple tasks that humans do every day become second nature. It’s often only thought about when these routine tasks take longer to complete for whatever reason. When something takes longer to do than normal, frustration often sets in. For some people with disabilities, basic tasks often take longer to complete. It can vary day to day which creates more frustration. As I’ve said before, learning patience is a must when living with certain disabilities or health conditions.
Cerebral Palsy is considered non-degenerative which means that the actual condition does not get worse over time. As I’ve explained in previous entries, though, many people have found that secondary effects of the condition often appear as people age. Many of my friends with CP have found this to be true. The most frustrating thing is that none of us were expecting these issues. As kids, our parents weren’t told to expect more problems as we age.
I recently had another emergency gastrointestinal surgery. I’m fortunate to be able to know what’s happening and that I need to go to the emergency room. This was the fourth time it has happened in less than nine years. I spent a week in the hospital recovering and then another week or so at my parents. Fortunately, my parents were able to stay with me at the hospital to help with communication and cares. By now, we know the recovery routine pretty well.
However, this time has been a little different. My body hasn’t bounced back like it has in the past. While thankfully, the actual stomach issue has been resolved, my body is sort of playing games with me. My muscle spasticity has been way worse since the surgery. When my spasticity is really bad, my body freezes. I literally can’t move until the spasm passes, and this happens several times a day. We have no idea why suddenly it has increased. When it happens, it’s not only painful, but it’s also very frustrating. I have no idea when it’s going to happen. It has happened several times during meetings on Zoom. I just have to turn off my camera and do the best I can to continue to participate in the meeting. Thankfully, people who I work with are understanding and patient with me, but it’s incredibly frustrating.
Due to this new issue, things also take me even longer to complete than before. I feed myself lunch everyday and I’ve noticed that it takes me much longer to eat than it once did. Same with typing--it’s taking me longer to accomplish things on the computer. My caregivers have noticed it too when they’re helping me with cares. When my muscles tense up, we have to stop what we’re doing and just wait. Fortunately, they’re all pretty patient and are good at taking the time I need.
I learned I need to have patience at an early age, but, admittedly, this has taken a toll on me mentally. Why is this happening to me? Will I ever catch a break? Is this my new normal? Questions such as these go through my head quite often lately. My poor mom gets the brunt of my frustration. We are working with doctors to try to figure out something that will help, but the truth is, there really isn’t a “cure all” for this. Unfortunately, it’s part of my condition and there are still many unknowns. At my post-op appointment, we questioned my surgeon about what could be done to prevent gastrointestinal issues from happening again. She told us that there is really nothing that can be done to prevent it. It’s just how my body is. She said that I have a “weird anatomy”,” and that there’s no way of knowing if/when it’ll happen again. Hearing that was discouraging. I told my mom, “I’ll probably end up dying from one of these gastrointestinal issues.” She didn’t know how to respond to that. She reminded me that it’s good that I’m able to tell when something is wrong and communicate that I need to go in. My surgeon emphasized that as well. Still, it’s a hard pill to swallow when your body is slowly declining at the age of 35, and there’s nothing you can do about it.
Let me be clear-- by no means am I looking for pity. I only share this to educate people. Obviously, I don’t hope anyone else is going through similar circumstances, but the reality is that people are. I want them to know that they’re not alone. May is Mental Health Awareness Month. It’s no secret that I’ve been in several “funks” from time to time. There are several different ways to deal with depression and anxiety. Some people see a therapist on a regular basis. Others take medication. Other people need in-patient treatment. There are several different options to help people deal with this. Personally, I use a combination of things. My mom is my sounding board. She is able to usually talk with me and get my mind in a better place. Sometimes, I talk with friends who I know have dealt with similar issues. Getting out and doing something social usually helps me a lot. I’m disclosing this in hopes of ending the stigma—several months ago, I talked to my doctor and started on a medication to kind of help me with anxiety and depression. I’m not proud to tell people that, but it’s life. I think it’s important to know that others need a little help. I finally got the courage to talk to my doctor after I talked with two of my friends who have similar issues. For me, the medication certainly doesn’t mask any of the thoughts or feelings I have, but I didn’t want it to. It does, however, seem to keep my mind a little bit calmer.
Mental Health is part of our overall well-being. Sometimes, life can be hard and unfair. We all have feelings of sadness and frustration sometimes. What’s important is how we deal with it. For me, when I’m having a rough time, my mom says, “remember, you’re doing the best you can.” She’s right. I really encourage people who are having a hard time in any way to reach out to someone who can be trusted. It could be a neighbor, a friend, a coworker, a doctor… whoever that may be, share your feelings with them. It’s ok to ask for help.
By Stacy Ellingen, 2021-04-18
“Sticks and stones may break my bones, but words will never hurt me.” Many people hear that saying in life. Is it true? Absolutely not. Words hurt. In today’s world, I wonder what would happen if words caused physical harm. I think we would have even more problems than we already do. Unfortunately, discrimination is part of life in the world we live in. I believe everyone gets discriminated against at some point in life—it’s just a fact. Obviously, there are lots of different types of discrimination. People with disabilities often feel more discriminated against than the average person.
“I used to take care of them,” a lady recently said to my parents while we were sitting by the pool in Florida. I was taken back by her comment. Them? Am I really a them? I know the lady likely didn’t mean to say it in a negative way, but it came off as if I was a part of some cult or something. I’m not a “them” just because I have some limitations. My mom went into her “Mama Bear” mode right away and started explaining all I’ve accomplished. This is a frequent occurrence when people make inappropriate comments or ask awkward questions about me. My parents don’t put up with rude people. When the lady left, I asked my mom, “am I really a them?” She and dad then went into their spiel about ignorant people. We’ve had this discussion a million times, but it doesn’t get old—it helps me realize that many people just don’t understand disabilities. In a way, talking about it with my friends and family (who obviously understand) helps me cope with the negativity.
I’ve written entries in the past about how people treat people with disabilities. People can be extremely rude. I’d like to think that they don’t realize they’re being hurtful when they say things, but sometimes, it’s hard to believe that. Thankfully, I was too young to remember this, but, when I was a kid and still in a stroller, a lady came up to my mom in a department store and asked her why she didn’t just let me die. Seriously? Who says that? I don’t even know how my mom responded, but I bet she said something to the effect that “I’m sorry you feel that way and I’m sorry Stacy heard you ask me that. We are extremely grateful that we have her.” My mom still brings it up every once in a while, so I know it hurt her.
As I get older, I find myself wondering if it will ever stop. Will my nephew have to respond to those inappropriate comments about me? How will he react? I know my sister, brother-in-law, parents, and I will try to help him understand that people will stare, point, and say things because I’m different. My hope is that he will understand and became another one of the people who help me advocate and respond.
As I’ve said before, kids are totally different. When they point, stare, and say things, they do it out of curiosity. They are trying to learn about differences. When I see a little kid pointing and asking questions or saying something, the adult with them often pulls her/him away and tries to hush the child. I don’t like this. Depending who I’m with at the time, I often try to interact with the kid. It’s so important to educate kids and let them ask the questions, so as they get older, they know how to interact with people who are different than them.
I believe people with disabilities also have to make a conscious effort to educate people. We can’t expect people not to react negatively if they don’t know how to appropriately interact with us. Of course, in a perfect world, people should not interact with people with disabilities any differently, but we know that this world is far from perfect. As a person with a disability, I feel I have a responsibility to educate people who don’t understand or know how to treat people with disabilities.
In today’s day in age, disability discrimination has been put on the back burner. With everything going on in the world, I believe there are many other pressing issues to tackle at the moment. That’s not to say that disability discrimination/equality isn’t important. It’s just the media has many more pressing issues to cover. I’ve only discussed verbal discrimination in this entry, but there are many other types of discrimination that people with disabilities face. Housing, financial, and employment discrimination are also very prevalent in the disability community.
Will there ever be a day when the pronoun “them” will be just associated with a group of friends and that’s the only meaning? Unfortunately, I don’t see that day coming anytime soon. It’d be a very boring world if everyone was exact same. We have to continue to make an effort to be vigilant and sensitive to differences. I challenge each of you to reach out to someone who is different than you this week. Take five minutes to talk to him/her and learn something about them. You never know—it could result in a lifetime friendship!
By Stacy Ellingen, 2021-02-27
If you could meet one famous person, who would you want to meet? Questions like this are normally not asked to adults. It’s not a usual topic that’s brought up in everyday conversations. Meeting famous people isn’t something most adults care about. Of course, almost everyone has a person or two we would love to meet, but it’s not something we normally do. Often, meeting a famous person isn’t a high priority. Most people aren’t comfortable with being called out for doing something good. Often, people appreciate acknowledgement and praise, but we are uncomfortable with it. For people with disabilities or health conditions, many times, offering to meet a celebrity or being praised for something can be a unique experience.
In an entry I did a few years ago, I discussed my opinion about the whole inspiration controversy. In short, while many people with disabilities hate when the word “inspirational” is used to describe them, I personally don’t normally mind. Don’t get me wrong, I don’t like being praised or called out for something I do, but I hope that I can be an inspiration to others. I believe part of my role as a person with a significant disability is to educate and show others what is possible.
I’ve seen many news stories about people with disabilities or health conditions getting to meet celebrities or getting to do something special as a nice gesture of an organization or person. While this is totally awesome for some people, I personally don’t like the idea of this for someone like myself. Why would I deserve something like that? Just because I have some limitations and have a different life than most? To me, that is not a good reason. I understand and fully support things like Make-a-Wish for kids with terminal illnesses. Kids with terminal medical conditions unfortunately don’t have much to look forward to. If their one dream of meeting someone famous or going on that special trip somewhere can be fulfilled, by all means, it should. However, I don’t believe that those of us who have physical disabilities (that aren’t considered progressive or terminal) should get that type of special treatment.
I was talking with my mom a few weeks ago about this, and I was telling her how a recent article I read about a man with the same condition I have has special relationships with a few popular country singers. I told her how I thought that wasn’t right. She then brought up something I never thought about. She said maybe that’s another form of advocacy for some people. Maybe some people like sharing their story with famous people and need that recognition to feel worthy. For me, personally, I feel like that is completely asking for pity. For full disclosure, I’ve done meet and greets after a couple of country concerts I attended with my friends, but that’s purely because we were a couple of giddy girls wanting to get autographs and snap a picture with a singer we loved. It lasted about 30 seconds and nothing was even mentioned about me personally. That’s the only way I will ever “meet” a celebrity. I have also met and shared my story with legislators, but when I do that, I’m advocating for better funding for the services I need to receive in order to help me live independently.
I’ve been told that some people probably think some of the advocacy work I do is asking for pity or drawing the wrong type of attention that I want. When I write these articles and do the YouTube videos, I hope I educate people about what life is like for people with disabilities and what we can do. I never ever do this to invoke pity. By doing what I do, am I bragging or showing off? Honestly, I can understand why some people may think that way, and I don’t think they’re completely wrong. I’m proud of where I am and what I’ve accomplished given the curves life has thrown me. I think people have to realize that people with disabilities may never be able to accomplish those big “life milestones” that most of our peers will be able to, so, for me at least, when I share personal experiences about living with disability, many times when I post whatever it is on my social media, I think of it as another milestone or life accomplishment. Is it the same as one of my friends posting about a new house or something cute or funny that their child just did? Of course not, but that’s ok. I still appreciate getting praise and acknowledgement from it.
I’ve been fortunate to have received some awards and recognition various things mostly related to the advocacy I have done. A couple of examples come to mind. The first was back in my senior year of high school. At the end of the year, I was invited to the senior sports awards banquet. Now, I obviously wasn’t an athlete, so I had no reason to be invited. I was told that the athletes had voted me to get the sportsmanship award (I attended almost every football and basketball game during high school). I also received a special sportsmanship scholarship at the academic awards night. Were both of those due to having a disability? In a roundabout way, probably, but again, it was because of something I was able to do despite my circumstances. I’m sure some people in my class felt like I was given undeserved recognition, but, for me, it was a huge honor.
Another thing that comes to mind is when my coworker and I received the “You Make a Difference” award for the articles we wrote in the local newspaper. This was when I was in college, and another lady and I had a weekly column we switched off writing articles for. It was all about experiencing life living a disability. The lady’s son had a disability, so she wrote from her perspective, and I wrote about my experiences. It was all voluntary, but the exposure was incredible for us. We ended up getting an award in Madison. I don’t remember where it was even through, but it was a very special honor. Again, it was because of my willingness and ability to share personal experiences about my disability that this happened.
The last example is when I received the Self-Advocate Diehard Award at the 2019 Self-Determination Conference. I’m not one to boast about myself, so I haven’t mentioned it in any journal entries until now. I was incredibly surprised and honored to receive this. I had done quite a bit of work with the Self-Determination YouTube channel and other things that year, so it was very humbling to be recognized. That too, was directly related to having a disability.
While it’s often hard or uncomfortable to accept, everyone appreciates some type of recognition or praise to some extent. There are so many different views related to this topic. There isn’t a right or wrong--it’s really about individual preference. People with disabilities just have some extra things to consider when receiving acknowledgement.
By Stacy Ellingen, 2021-01-28
As the saying goes, “you don’t always get what you wish for.” It’s common to hear people say “make a wish,” after singing the Happy Birthday song. It’s also common to ask people to make a wish list for special occasions such as Christmas or birthdays. Regardless of the situation, when people are asked to make a wish as adults, it often provokes some thoughts. What do I wish for? Is that wish even possible? What would happen if it came true? People wish for all sorts of different things. Little kids usually wish for toys they want. As adults, we often wish for things that are not tangible. People with disabilities are no different. While our wishes may be a little different than most, we still have fantasy dreams and seemingly unattainable wishes.
As a kid in third grade, I vividly remember, as an assignment, we had to write down two wishes—one realistic and the other one probably unrealistic. We had read a story about wishes or something, and the teacher was trying to get us to think about realistic vs. fantasy or unrealistic. For my realistic wish or goal, I wrote down I wished I could eat a whole pizza (I have no idea where that came from that day, but that’s what I wrote down). For my other wish, I wrote that I wished I didn’t have cerebral palsy. I remember the teachers being surprised and not really knowing how to react. Looking back, I wonder what I was thinking as eight or nine old year kid? Did I really feel that different? Was there something that I was unable to physically do on the playground that day? What made me say that at that young age? Of course, I don’t know the answer, but I find it interesting that I remember that particular time. It’s something that I still wish for to this day. As I’ve discussed in previous entries, unlike many people with similar circumstances, I would love to be “cured”.
I remember my first year of junior high my mom asked me to make a Christmas wish list. I listed some tangible items, but then the last wish I wrote down was for my two best friends from elementary school to be able to attend the same junior high school I went to. Because of where we lived, I attended a different junior high school than most of my friends from elementary. I made friends in junior high, but they were never as close. As a teenager with significant physical challenges, making friends was a bit of a challenge. Obviously, that wish couldn’t happen, but it just shows how my wishes have always been a little different even at a young age.
As an adult, my wishes haven’t changed too much. While I still wish for a cure, I find myself realizing that a cure probably isn’t going to happen in my lifetime. I wish for other intangible things like love, a relationship with a significant other, and a family. While I know these things may not be in the cards for me, I will always have a desire and wish for them. It’s a running joke between my mom and I—each time she asks me what I want for my birthday or Christmas, I tell her I want a guy. She always says the same thing to me. “I can’t help you with that one,” she says.
As a person with limited mobility, I often wish I could visit people more. Obviously, during the pandemic, everyone feels that way, but when we’re not under restrictions, I wish I could just go visit my family and friends. Due to things like accessibility, transportation, and cares, I’m not able to just go visit people—I have to plan every detail if I go visit people. While I’m used to it and my family and friends understand, I would love to just hop in a car and go visit friends. Fortunately, my friends and family are pretty good at making the effort to come visit me or making arrangements far in advance, but I’d love to be able to spontaneously go visit them.
I also wish for other intangible things like health for my family and I, and better services to assist me. As I get older, my future is becoming more and more uncertain. With needing the amount of care I do, reality of my future is becoming increasingly important. How long will I be able to stay in my apartment? How much longer will my parents be able to take care of me? These questions are why I constantly wish for continued good health for my parents and I. Most adults likely wish for good health for their loved ones; however, when you rely on family as much as I do, you constantly worry about their health.
Wishes are like dreams. While some are tangible or realistic, others are far-fetched and fantasy like. Wishes and dreams often keep us going. A wish may seem impossible when first thought of, but, maybe after some planning and research, it might seem more doable. They may ignite energy in us to continue to strive for something that may or may not be possible. Almost everyone has both realistic and far-fetched wishes. Next time you blow out the candles on your birthday treat, I encourage you to make two wishes—one that seems attainable or realistic and one that doesn’t seem possible. I hope both wishes come true for you!
By Stacy Ellingen, 2021-01-07
2021 is finally here! With vaccines beginning to be administered, hope is on the horizon. There are many different factors to consider regarding the vaccine for COVID-19. With it being so quickly developed, is it safe to get? Are there long-term side effects we don’t know about yet? Who should be priority and what is the criteria that makes them so? Should employers be able to make it mandatory for employees? How long will it take to get enough people vaccinated so the world can return to some sense of normalcy? How long will the vaccine protect people? These are all questions circulating in today’s society. Where do people with disabilities fit into this discussion? That’s a good question. Like almost every minority, at least for myself, I feel like I’m at a higher risk even though I’ve already had it once.
In previous entries, I’ve discussed how careful my immediate family and I have been from the beginning. We wear masks everywhere we go and really limit our outings and gatherings. My nephew is over six months old and we still mask up when we’re around him. My sister works in the healthcare field, so she and her husband wear masks anytime they’re around anyone else. We knew I’d be at risk of getting it simply because I have caregivers come in. Sure enough, the first week of college classes, a worker was exposed in a class, caught it, and unknowingly brought it into my house. In turn, myself and two or three workers contracted it. Fortunately, my symptoms were very mild, but I ended up having to go to my parents for over two weeks because all of my workers were quarantined. Miraculously, somehow, my mom and dad didn’t get it (that’s still something weird about this virus—how can both of test negative when I was with them 24/7 for over a week? It doesn’t make any sense), but what if they caught it, and got really sick? What would have happened? Questions like these are what keep me up at night. We just had another scare recently where a worker’s husband tested positive and the worker exposed me without realizing it. As a precaution, I went to my parents for a few days. After talking with my doctor, we found out it’d be extremely rare for me to catch it again, and I’m probably not even a carrier anymore. Again, there is still so much unknown about this virus that it’s hard to know what to do.
How should the vaccine be prioritized? Obviously, healthcare workers and first responders should take first priority. They’re risking their lives to help and protect others who may or may not take this virus seriously. After that, I’ve heard residents in long-term care facilities will be next. While I understand they're at higher risk because they live in a congregate setting, I guess I have sort of a hard time understanding this simply because they unfortunately don’t have the opportunity to leave the facility most of the time. That said, if it means that residents can finally have visitors, I totally understand why they’d be next. I’m just not sure that’s the case as of yet. After people in community living settings, I think it’ll go by a combination of age and health risk factors. Where will people with disabilities fall in this equation? That’s the million dollar question for many of us. In my opinion, it’s going to widely vary depending on individual circumstances. I haven’t talked to my primary physician about this yet, but I’ve talked to other doctors and they feel I may be a higher priority just based on having cerebral palsy. Since I’ve already had it, though, I’m not sure how that’ll factor into it. For those of us who rely on other people to take care of us, it’s an uneasy time. We have no choice but to be physically close to people. I’m hoping in-home caregivers will have some priority just like people who work in long-term care facilities did. Time will tell.
The other question is whether the vaccine should be mandatory or not. Even though, I personally believe that everyone should get the vaccine, I understand why it can’t be mandated. Especially with this being such a new vaccine, people have reservations. People have the right to refuse medical treatments. Many people don’t believe in any vaccines which is their right; however, I don’t know where the line is drawn between personal choice and public safety. That’s a hard question that I’m not going to get into. Therefore, as an IRIS participant, I can’t force my workers to get the vaccine. This is why it’s important that people who are in situations like myself (those who need assistance from other people to complete daily living skills) get the vaccine as soon as possible.
With a vaccine beginning to be administered, I feel hopeful. While understandably, some people are hesitant to get vaccinated, I’m more than ready. Even though we don’t know the long-term effects of it, my opinion is that we have something that will most likely keep us safe and make it so that we can gather freely again hopefully sooner than later. Yes, getting the vaccine is risk, but I’d rather take the risk than continue to live in isolation forever.
By Stacy Ellingen, 2020-12-11
Waiting. Whether it’s waiting for a red light, waiting for a loved one to come home, waiting for a package to come in the mail, or waiting for something else, whether we like it or not, waiting is a part of life. Some people do it better than others, but, generally, people don’t enjoy waiting. The saying, “patience is a virtue” comes to mind when we discuss the challenges of waiting. In a past entry, I talked about how people with disabilities are generally pretty good at waiting because basically we many times we have no other choice than to since we depend on assistance from others. However, we aren’t the only ones who need to have patience. The people who we work with and interact with often need to have some patience as well.
Having severe physical limitations, things take much longer to complete most of the time. Things as simple as grasping a straw to take a sip of water or hitting a button to open the door can take me a lot longer than the average person. With the type of cerebral palsy I have, when I’m under any sort of pressure to do something, my body freezes. When my brain tells my muscles to do something under pressure, it’s like they lock up. It’s not only frustrating for me, but it’s also frustrating for people who help and interact with me.
My mom, dad, sister and close friends understand this pretty well and know not to rush me most of the time. However, like everyone else, they occasionally get impatient and get frustrated with me. They know it’s part of my disability and that I’m trying my best, but, sometimes, understandably it’s frustrating to wait for me to do the simplest of things. They get irritated with me, and, often, want to just quick do whatever the task is for me. Sometimes, that isn’t possible though. For example, when I’m talking to them using my communication app on my phone, they often try to guess what I’m trying to say before I’m finished typing it. Now, others who use communication devices absolutely hate when people do this; however, I personally don’t mind. If they guess wrong, I just continue typing. If they guess right, we can just move on with the conversation faster.
It’s frustrating when others close to me don’t understand this. I remember one family Christmas a few years ago, I was trying to talk to a family member about something, and the person got up and walked away while I was trying to talk to them. I realize the person did this because they didn’t realize I was trying to talk with them, but that is so frustrating. People who don’t realize that often things take me longer, don’t know to wait for me.
Sometimes, even though it’d be much quicker to have someone help me, there are things I like doing independently. This is the case for many people with disabilities. While we appreciate the help, sometimes, it’s gratifying to be able to do things by ourselves. This example is funny, but it demonstrates this point well. For me, I’m able to physically use a tissue to blow my nose myself. As weird as that sounds, you have to understand the skill it takes to grab a tissue and hold it up to your nose yourself when you have limited fine motor skills. Would it be easier and quicker to have someone hold the tissue for me? Absolutely, but it’s something I can do independently. Other people with similar circumstances use opening a door as an example. Would it be faster if someone else opened it for you? Sure, but independence is such an important thing.
Over the last few years, I’ve seen many doctors for various reasons. One thing I’ve noticed is that for whatever reason doctors seems to be patient with me. Most of them wait for me to communicate, and usually don’t look to my mom for what I’m trying to say. I’m impressed by this. Maybe it’s because they know me well enough to know to wait. It’s nice—I really appreciate it. I wish others would follow.
I fully admit, I lose my patience with myself and others from time to time. It’s human nature. Living with a disability has taught me lots of things, but patience is one of the biggest things. In my situation, I literally have to be patient with my body. If I try to rush things, it’ll likely end up taking me significantly longer. People who get to know me learn this pretty quick most of the time. People who don’t know me well get frustrated waiting for me to do things. While I understand, unfortunately, I can’t change that. It’s something I deal with on a daily basis, and I’ve learned to try my best, and accept that some people will never understand why things take me longer. Patience is truly a virtue, and, while some have more than others, waiting is something everyone has to do to some extent. All the time—but especially during the holiday season this year—remember people are doing the best they can. Be patient with others. Take the time to talk to people. Try not to rush people. Life is too short!