Category: Stacy's Journal
By Stacy Ellingen, 2023-08-31
Asking a question. Responding to a question. Talking with coworkers in a meeting. Conversing with friends and family over dinner. Adding your two cents during a argument. Telling someone a story. Asking for help with something. The list goes on and on. People verbally converse with others often hundreds of times per day. Verbal communication comes naturally for people. When was the last time you thought about the words that you were about to say? Unless you’re giving a presentation or speaking at an important meeting, you usually don’t think about every single word you say before speaking it. Most people often don’t even think about the words coming out of their mouth. Verbal communication is the norm and, we, as humans, are accustomed to listening to people verbally speak. What happens when a person is unable to communicate verbally? People who have certain disabilities often find this really challenging and frustrating. Whether a person has a hearing impairment and communicates through sign language or if a person has a speech impairment and uses an augmentative device to speak, the general population doesn’t know how to talk with people who use alternative methods of communication.
If you have read my past entries, you likely know that my disability affects my ability to verbally speak. I’m able to make some sounds and form some words, but the average person would not understand my speech. My family and friends who are around me more can understand often understand what I’m saying because they’ve been around me for so long. I don’t remember exactly when, but therapists started having me use very simple picture boards to communicate when I was very little. When I started Early Childhood when I was three years old, they started working with me on an augmentative communication device. Growing up, I had many different types of devices. I’ll be honest. I’m not the model augmentative communication device user. There are a couple different parts to this. First and foremost, until just a few years ago, mounts for communication devices used to be huge and very cumbersome. Through college, my devices were on huge trays and mounts that inhibited my independence. I couldn’t pull up to tables or desks when it was on. Second, most people who use comm devices use icons and sequences to form sentences. Despite multiple therapists attempting to get me to do so, I’ve personally never liked using sequences. I’ve always felt like I it was better to type everything out rather than using sequences and preprogrammed phrases. That’s just me. It wasn’t until about six or seven years ago that we realized that I could use the communication app on my cell phone. This changed my life. My dad is pretty handy and before I moved to Oshkosh, he created a mount for my cell phone using a footplate from an old manual wheelchair. When I learned that my communication app could be downloaded onto my phone, I was so psyched. I actually now use two different communication apps. One I use when I have to preprogram things for presentations I do, and the other is basically a fancy word prediction program that I use for spontaneous communication. It’s amazing having these apps on my phone where I can easily access them.
Having said all that, I still feel communication is by far my biggest barrier. Sometimes, people ask me if I could have one ability that I don’t have, what would it be? Without hesitation, I always say the ability to verbally speak. This surprises people, but it’s a no-brainer for me. Not only are there obvious stereotypes associated with being not able to communicate in the “normal way,” it’s also incredibly frustrating.
My communication apps are great; however, the honest fact is that it does take me substantially longer than the average conversation time to get out what I want to say. It’s been that way my entire life and I don’t see that changing anytime soon. When I’m having a one-on-one conversation with someone who knows me, it’s usually ok. The person knows to wait. It’s a personal preference for each communication device user, but I don’t mind if the person watches me type and tries to guess what I’m going to say—it saves me time and energy. However, some users prefer that people not guess. It’s truly an individual choice. Even if the person knows me, he/she will often walk away mid-conversation while I’m typing and start a conversation with someone else. That’s incredibly frustrating. Depending on the situation, when I start a conversation with someone who doesn’t know me well, I often explain that it does take me longer to communicate and kindly ask for their patience. Sometimes, it works, but, often, it doesn’t. For meetings, if I can preprogram anything (like I often program a short introduction), I do. Spontaneous communication is tricky in meetings. Often, by the time I finish typing my thought about something, the meeting has moved on to a different topic. Depending on the situation, I either speak my thought and apologize for the delay or, oftentimes, I just don’t share it because it’d interrupt the flow of the meeting.
Virtual meetings are unique. Like I do for in-person meetings, I look at the agenda and preprogram what I can ahead of time. For spontaneous communication, I find it easier if I type my thoughts in the chat box and have someone relay it verbally to the group. Not only am I a little faster typing in the chat using my eye gaze system than I am typing in the app on my phone, it also doesn’t interrupt the meeting as much. Do I still miss out on a lot of opportunities to share my thoughts because I can’t verbally speak? Absolutely, but this is the best way I can think of to effectively communicate. Some people who use communication devices will have each word speak as they type and hold up the meeting until they finish their thought. Again, it’s personal preference. Personally, as ironic as it sounds, I can’t stand having people—especially a large group—wait for me. Having that pressure makes my muscles extremely tense making it harder to type. I also don’t believe that it’s right to hold up people’s valuable time in professional meetings just so I can speak my mind. It’s my self-consciousness, I guess.
Over the years, I’ve gotten better about asserting myself in certain situations. If I’m comfortable with the group, I’m more apt to express my thoughts even if the discussion about the topic has ended, but, admittedly, I usually have a lot more I want to say. Not having the ability to verbally speak is the most frustrating aspect of my disability. All I can do is continue to put myself out there and make sure my voice is heard!
***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, 2023-08-05
A child winning a trophy. A person accomplishing something amazing. Someone conquering a fear. An individual achieving a longtime goal. What do these things have in common? The feeling of pride. According to Google, the definition of pride is “a feeling of deep pleasure or satisfaction derived from one’s own achievements, the achievements of those whom one is closely associated; or from qualities or possessions that are widely admired.” In the last quarter century, the concept of pride has taken on another whole meaning. Many minority groups have leveraged the idea of pride into their culture. Minorities have begun dedicating specific months to celebrating their culture. February is African American month. June is gay pride month. Disability pride month is July.
“I struggle with the concept of disability pride,” I told my mom as we were driving to the Self-Determination YouTube Channel retreat in Madison a few weeks ago. We were talking about the Madison Disability Pride Fest that was happening the next day. For multiple reasons, we weren’t able to attend this year, but my mom and I got on the topic of disability pride. In late July, I was on a panel that presented for the Leading Learning Agency Webinar Series. There were 350 people listening and the topic was disability rights. Most of the questions were about disability pride. I was telling mom how some people probably didn’t like my answers because I have a very different opinion about the whole idea of disability pride than many people do.
In my personal opinion, the word pride means proud. When you have pride in something, you feel proud of whatever it is. Am I proud of the fact that I have a significant disability? Unlike many people, I can’t bring myself to say I am. In fact, I can firmly say that I am not. I really admire anyone who can say that they’re proud of having a disability –what a strong individual you must be! The whole idea of disability pride is very similar to the disability awareness months. In a previous entry, I discussed my views on those. I’m not a fan of focusing solely on one’s limitations. Personally, the last thing I want is attention drawn to my disability.
Having said all that, I’m all for celebrating how far people with disabilities have come. Or, I should say how far society has come in including people who have disabilities. The concept of disability pride was started to celebrate the passing of the Americans with Disabilities Act and the rights and protections it gives to people. The 33rd anniversary of the ADA was at the end of July. I think Disability Pride month is twofold. Obviously, it’s important to acknowledge and celebrate all that has been able to be accomplished thanks to the ADA. It’s great to recognize all the things that people with disabilities are able to do because of the ADA. I also feel that the concept of Disability pride acknowledges the fact that people with disabilities still don’t have the same opportunities as their non disabled counterparts. Simply put, it serves as a reminder that we, as disability advocates, have more work to do.
Being a self-advocate and also working in disability advocacy, I find myself always trying to find a balance. I’m not proud of having a disability, but I’m proud of what I’ve been able to accomplish despite having some extra barriers to overcome. In my opinion, advocating for what you need and sharing your experiences isn’t necessarily prideful. I believe advocacy is about educating others. Am I proud of the fact that I’m helping others learn what it’s like living with a disability? Absolutely; however, that doesn’t mean I am proud of having a disability. I also feel there’s a difference between accepting your disability and having pride in having a disability. I acknowledge and accept that I have a disability—it’s a part of my life. However, I don’t take pride in it.
I also feel like the people first language debate comes into play here as well. In a previous entry, I talked about how even though there continues to be a move away from the people first language, I still prefer to use it. Maybe I’m just too self-conscious, but I hope that people view me as the person I am first. Sure, obviously especially with physical disabilities, people are going to associate me as having a disability, but I hope they see the person I am first.
Over the years, it seems like more and more people have pride in being disabled. Maybe it’s because society is embracing the concept of disability more. Maybe it’s because people with disabilities feel like they are more united. While I personally can’t say that I have pride in having a disability, I have the utmost respect for those who do. Probably not our lifetime, but, someday, there won’t be any pride needed because society will be so inclusive that differences won’t 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.
By Stacy Ellingen, 2023-07-01
Tall. Short. Heavy set. Thin. Gay. Straight. Wealthy. Poor. African American. Caucasian. Indian. Hispanic. Elderly. Young. Disabled. Non-disabled. There are many different types of ways we categorize people. In today’s day in age, we are taught not to discriminate against any type of minority. While, in theory, being non-discriminatory is certainly correct way, we all discriminate. Most of the time, we don’t even realize that we’re doing it. It’s human nature to favor people who have similar characteristics as you. People have to make conscious efforts not to have bias towards people who have different characteristics than they do. The question is often brought up debating whether or not giving minorities priority over certain things. According to Google, affirmative action is “a policy aimed at increasing workplace and educational opportunities for people who are underrepresented in various areas of our society.” People with disabilities is one of the minorities affirmative action often affects.
Late last month, the Supreme Court ruled against a legal precedent that allows college and universities to use race as a factor when deciding admission. Basically, it means they can’t accept or deny a person based on race. The specific case refers to Harvard University and North Carolina University, but the ruling will affect all universities. Previously, colleges could take race of applicants into consideration when deciding admission.
I hadn’t been following the case closely, and when my mom texted me about it, my first reaction was, “well, I agree with that… Why would people be able to make decisions about admission based on a person’s race?” Initially, when I learned about the concept of using a factor physical characteristic in determining admission to universities I immediately thought “well, my disability wasn’t a factor in my acceptance to UW-Whitewater, was it?” It was over 20 years ago that I applied, but I don’t remember checking a box saying that I had a disability. Now, yes, I did mention that I had a disability in the essay, but I can’t say whether or not it was a deciding factor in my acceptance. While I certainly hope that the decision wasn’t solely based on the fact that I had a disability, if the people who read the essay were positively influenced by my essay, that’s fine.
I’ve been thinking about this a lot since the court decision was made. Is it fair to give bias about certain things to minorities? I can see both sides of the argument. On one hand, I don’t think it’s right to give opportunities to people based on physical/ethnical/sexual characteristics. On the other hand, though, people in minorities deserve a chance, and that chance may only happen because of affirmative action. I believe it’s a really fine line. I don’t think it’s right that people who are in minorities be awarded opportunities just so schools or businesses can meet a certain quota; however, I think it’s really important that places take the whole individual into consideration when making decisions. To me, the whole individual means every aspect of the person. In other words, don’t just base the decision on a sole factor, but rather, consider things like their background, skills, traits, etc… collectively to decide.
Have I benefited from affirmative action? Absolutely—without a doubt. Working in the disability advocacy field, it’s kind of unique. While I know that I’m employed by the three organizations I am because I do have a disability, I’m hoping that’s not the sole reason why they hired me. I hope they see other characteristics and traits in me that make a good employee. In this situation, my hope is that they see my disability as a bonus as I can use my personal experiences to help others. I can’t say for sure, but I think the organizations I work with do see it that way.
The recent ruling is probably viewed as a disappointment among most in the disability community. While, yes, I understand why it was important to have affirmative action in universities, I also think it’s a great opportunity for schools and businesses to reevaluate the criteria they use to make important decisions. There needs to be a balance between having the skills or traits needed to fulfill the requirements of the particular opportunity and taking life circumstances into consideration. It’s truly unfair to make a detrimental decision unless both concepts are considered together. Unfortunately, I think it will be quite some time before that becomes the norm in society, but I have hope as we move toward a more inclusive country!
***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, 2023-06-10
Do you like the steering wheel up or down? Do you prefer the rearview mirror tilted to the left or right? Do you like your showers warmer or cooler? Do you tie your shoes loose or tight? Do you have a certain way you like your pillow at night? There are thousands of things that people adjust to their personal preference. Most of the time, people automatically make these minor adjustments without even thinking about it. People do these things to make life easier or more comfortable. Obviously, every person has different preferences for everything. That’s what makes us unique individuals. People with disabilities are no different. We have preferences about how we like everything just like everyone else. In fact, many times, we have unique preferences just based on functionality.
A few weeks ago, my sweet cousin went to my class reunion with me as my date/caregiver. She’s a speech therapist and has worked with many people with varying abilities. She has helped feed me at family gatherings before and obviously knows how I communicate. She had never been with me solo at an event with me, though. As my mom was helping me get ready, she and I were making a mental note of things that we should explain to my cousin before we go. These things wouldn’t be brought up in normal conversation with anyone, but these seemingly miniscule things make my life so much easier. We probably bombarded my poor cousin, but she did a fantastic job of making sure she did everything right. Those small details made things so much easier and it was a really fun night!
What are the small details I’m talking about? To most people, these won’t make any sense, but, again, personal preferences are what make life enjoyable. For starters, my left side of my body has more control than the right. For whatever reason, it’s so much easier if people sit or stand on my left side to help me eat or drink. When people sit on my right side, because of the way I sit, it’s much more difficult to turn my head and maneuver my body to be able to eat. My right arm also tends to be much more spastic, so, often, my arm accidentally hits the person. On more than one occasion, I accidentally hit food or drink out of someone’s hands. I wish I’d had the confidence to speak up about this when I was younger because it probably would have made things a lot easier. It wasn’t until a few years ago that I started asking people to please sit on my left side. Chalk it up to getting older, I guess.
Another really unique quirk I constantly find myself asking people who help me to do is to move my cell phone like a half inch up on the mount on my wheelchair. Again, it’s hard to explain, but my cell phone mount is right below my joystick on my chair, and the top of my phone needs to be up against the bottom of the joystick. It leaves a half inch of the mount showing. That half inch makes a huge difference for my access. If someone puts it lower, I have a really hard time accessing it. Whenever we train new caregivers, I make sure to have the veteran worker explain it to the trainee. Again, people probably think that I’m crazy for making a production about a half inch, but, in my world, it makes a huge difference.
There are multiple other small quirks I have to make life easier. I need my shoes tied extremely tight otherwise I will kick them off. When I get in bed at night, my head has to be touching the headboard in order to make sure that I can reach my phone and door opener. When workers make my lunch, they have to leave the zip lock bags open because I’m not able to open them. The straw in my water bottle has to be pointing a specific way so I can reach it. Seemingly mundane things like these are what help keep me as independent as possible.
I’ve discussed this a little bit in previous entries, but food is another example of when personal preference comes into play. Obviously, there is the basic like or dislike of individual foods, but, beyond that, there are some common preferences among many people who have cerebral palsy. For whatever reason, certain textures of food really bother some of us. A lot foods that have certain filling tend to bother many people. For example, yogurt and pies absolutely gross me out. When I try to eat something like that, my gag reflex (again, common among people who have cerebral palsy) kicks in and I almost lose my cookies. Yet, I can eat ice cream (I often have the debate with people—yogurt is not the same texture as ice cream) and some puddings. Some people who have cp need their food extremely hot. Another thing we’ve recently noticed is that a lot of people with different abilities tend to prefer to eat one food at a time whether than switching between multiple foods. I don’t know if there is any research on this, but some of us think it’s easier for our palates to adjust to one texture at a time whether than switching between different textures. Again, a small, but important preference.
Everyone has small quirks that they do to be comfortable. Most of the time, people don’t even realize that they have them, but, when you rely on others for physical assistance, those quirks need to be communicated. Sometimes, people may think you’re overly particular, but that’s ok. Those quirks often allow you to be as independent as possible. I have a ton of quirks that are truly based on functionality. I continue to learn small quirks that makes things easier for me. They make a world of difference!
By Stacy Ellingen, 2023-05-01
“Remember when this happened?” “Remember when that happened?” Can you believe we did this?” ”Can you believe we did that?” Whether it’s a dinner party with friends, a random family gathering, a class reunion, or another social event, as adults we often find ourselves reflecting on the past. Reflecting is an almost unavoidable part of life. Depending on the circumstances, sometimes it can bring up unpleasant or hurtful memories, but oftentimes it brings back joyful or funny memories. Reflecting also makes us think about all that has happened and how far we’ve come. I can’t speak for others who have different abilities, but I love to reflect. Especially when things get hard and seem impossible, thinking and talking about my past helps me realize how far I’ve come and ignites my ambition to keep fighting.
“I, Stacy Ellingen, leave wondering what the actual speed limit is in the halls of Fondy High?” A class officer recently posted our Class Will in our class Facebook group as we get ready for our 20-year reunion at the end of this month. I have no recollection of putting that the will, but, when I read it, I thought it was hilarious! 20 years. I find myself wondering how that can even be possible. Sometimes, it feels like it was forever ago, but often, it seems like it yesterday. I can’t believe it’s been 20 years!
As the reunion approaches, I find myself reminiscing on my primary education. I was enrolled in the school district for 15 years. I started in Early Childhood programs when I was three-years-old (and I was in Early Intervention programs before that). As I’ve explained in past entries, I was enrolled in regular kindergarten class when I five. From that point on, with the exception of a few modified gym classes sprinkled in throughout the years, I was in all regular education classes. I had a one-on-one assistant who helped me in the classroom. From second grade on, I was incredibly fortunate to have the same assistant with me until I graduated. Now that I’m working in the disability advocacy field, I realize just how rare that was. This special lady made my school years all they could be. We say it was meant to be because we were partners in crime! 😊 I contribute so much of my success to her—I’m confident that I wouldn’t be where I am today without her!
Since I was in all regular classes all the way through, my peers got to know me and understand that I was just like them except that my body didn’t work like theirs. Like every other kid, I made friends. Did it take some effort to be friends with me? Of course, it did, but know what? Kids did it on their own. I was never involved in any social skills group or anything—my classmates and I figured it out. Was everyone my friend? Heck no, but kids aren’t friends with every single classmate. People in my classes learned how I did things and understood that my assistant was only there to help me physically. They saw me fail tests and occasionally get a bad grade on an assignment, but that proved to them that I was just like them.
As I’ve explained in previous entries, I contribute a huge part of my primary education to being involved in extra-curricular activities. This is largely thanks to my parents. For a few years in elementary school, my mom was a Brownie leader so that I could participate in that. In sixth grade, I was part of a chorus. Saying that now, I realize it sounds kind of funny because I’m nonverbal and obviously can’t sing for the life of me, but, at the time, it didn’t even cross my mind; I was with my friends and that’s all that mattered! In junior high, I was part of the Junior Optimist Club for awhile (in fact, I was even a grade representative one year). In high school, I was involved in POPS (Power of Positive Students) for a year and then I got involved in Student Council my last two years. Again, physically, I wasn’t able to contribute very much, but I could participate in activities. Most importantly, I had social interaction with my peers. Another thing that really helped me fit in was that I attended all the school dances. I also attended almost all of the football and basketball (boys and girls) games in high school. It further showed my classmates that I wanted to fit in.
Did I receive some special recognition at the end of my senior year? Yes. I received a sportsmanship scholarship from a very special family. I was also invited to the senior sports banquet where I received a sportsmanship award. I think some of the coaches played a large role in it behind the scenes, but I was told it was voted on by the athletes. To date, that’s one of the most memorable moments of life. There was something really special about being the only non-athlete being invited to the sports banquet and then receiving a standing ovation from your peers who are amazing athletes. It’s something I’ll never forget.
Not to sound too nostalgic, but my graduation was unbelievably special. I had been in school for 15 years and people understood what an accomplishment it was. I had special connections with many people in the district. I knew it was an end of an era. It didn’t hit me until after the ceremony when my assistant and I were literally running through the halls of the high school and catching the elevator up to my homeroom where I received my actual diploma. At that point, I had no idea what my future held and I wasn’t worried about it. I was ready to take on the world!
20 years later and here I am. I don’t think I had any expectations back then. However, I would have never dreamed of where I am today. We had a 10-year reunion, and, at the time, I couldn’t believe everything that had happened in 10 years. However, I think more has happened in these 10 years than the first. At our last reunion, I had just graduated from college and moved into my apartment. I didn’t have a job and wasn’t involved in any sort of advocacy. I had an agency doing my cares. A lot has changed in 10 years! Will these things seem significant when I tell people at the reunion? Probably not, but that’s okay. It’s important for me to remember how far I’ve come.
What will happen in the next 20 years? That’s a very scary thought. I won’t get into it in this entry, but the reality of the future has recently slapped me in the face. I’ll just say it’s too frightening to think about at the moment. I’m beyond amazed and proud of what I’ve been able to accomplish in the last 20 years. I don’t know what I expected, but never in my wildest dreams did I think I’d end up where I am today. Do I wish that could accomplish other significant life milestones like many of my classmates have? Of course, I do, but desiring those things shows how “normal” I am. Will those special milestones ever happen for me? Maybe. Maybe not. For now, I’m trying to enjoy life to the fullest and not get too caught up in what’s next!
By Stacy Ellingen, 2023-03-31
Whether it’s getting your foot in the door for a company you want to work at, getting an important question answered, gathering information for a critical decision one has to make, getting in touch with the right person about something important, or getting something that you really need approved by the state, most people have benefited from having connections at some point in their lives. Connections can come from all different facets of one’s life. When people are fortunate enough to happen upon the right people in various aspects of their life, it often turns out to help them in ways they didn’t foresee. Having connections helps everyone find their way through life. People with disabilities are no different. In fact, for many different reasons such as preconceptions, isolation, and the lack of resources, we likely rely on connections more than most people. For people with disabilities, the power of networking and finding connections is crucial in our lives.
In previous entries, I’ve explained that, ironically, my mom was a special education teacher before I was even born. She was teaching for several years before I was even born. Some call it fate...I don’t think it’s coincidence that I came along and had some challenges. Obviously, I was too young to realize it for quite some time, but it was a huge blessing to our family. Not that mom had all of the answers, but she had some knowledge of disability and knew of the resources available to help us navigate through the system to get what I needed to be successful. She was aware of our rights and she knew what to advocate for. She knew the process of IEP meetings and what services I needed. Albeit, it got a little awkward when she became a Program Support Teacher (where she reviewed IEP paperwork and attended meetings for students in different programs) and then had to switch roles and be the parent during some of my meetings that got heated (I feel like every kid with significant needs has at least one or two intense meetings during their school years). The team did a good job of understanding she needed to be a parent in those situations, though.
I don’t even remember how this happened, but my sophomore year of high school, we began looking at UW-Whitewater. I believe that I got a brochure in the mail about a camp they put on for people who use augmentative alternative communication devices. For various reasons, I never ended up going to the camp, but, through one of my groups on the Internet, I connected with the organizer of the camp. He was a student at Whitewater and had very similar needs. I talked with him via email, and his hometown was only 20 minutes away from where we lived. My mom and I ended up going to his house to meet with him. I was amazed to learn that someone like me could go away to college and succeed. The summer before my junior year, my mom and I went to see the campus of UW-Whitewater. for the first time. Obviously, it was way too early to do a formal visit, but I wanted to see if it was something I’d be interested in. We met with my friend again—this time at his apartment. After that visit, I knew that was where I wanted to go. It was because of a by chance connection on the Internet that I found an amazing opportunity that ultimately shaped the rest of my life.
When I moved to Whitewater, I literally knew two people . One was the organizer of the camp and the other was a girl I met during my pre-enrollment day (Whitewater has students with disabilities come to campus a few months before to meet with people at the Center for Students with Disabilities). The girl I met also had very similar needs. She graciously gave me her contact info and we began talking. In the months prior to moving down there, I asked her all sorts of questions about college. Looking back, there’s no doubt that I bugged her with pretty silly questions, but she was good about answering them. As luck would have it, that summer we learned that we’d be neighbors in the dorm for my freshman year . She took me under her wing that year and showed me the ropes. As I met more people, I obviously made a lot more connections. Like everyone else, having connections helped me navigate college life.
About my third year of college, my mom forwarded me and email she received from her work about an online mentoring opportunity for students with disabilities. It was through Midwest Alliance which was associated with UW-Madison. I ended up mentoring high school students with disabilities for about five years, but that isn’t the point I want to make. The manager of the program really connected with me and ended up asking me to be on a panel for a session at the Transition Conference. Being able to attend that conference literally changed my life because I was introduced to the world of disability advocacy. At the conference, I was able to attend sessions about employment for people with disabilities which happened to be perfect timing because at the time I was struggling with DVR to find employment. I ended up connecting with the presenters of one of the sessions, and, although in a very roundabout way, that connection led me to becoming self-employed and working with the organizations I do. It’s really incredible to think about all of the connections it took for me to be where I am today. It’s simply amazing!
I’ve been incredibly fortunate to be able to make even more connections that have personally benefited me through the advocacy work I’m involved in. Knowing the people to contact when I have a question or need something has been so helpful. I’ll just share one recent example. Our wheelchair accessible van was totaled in mid-February. It was literally my only means of transportation. Right away, I posted on Facebook asking if anyone knew of any funding resources for van modifications. Much to my surprise, I learned that I could ask for a one-time expense through IRIS. My awesome consultant had never done one before, so she and her supervisor worked together to get the process started literally right away. They found out that I needed to have an accessibility evaluation done. They contacted my Independent Living Center to set it up. The Independent Living Center knows me as I’ve done some work with them over the years. They understood the urgency of the matter and they were able to squeeze me very quickly and do the assessment. They were amazing and we had the report early the next morning. It was submitted to the state. I waited a few days and then I reached out to someone who works in DHS and has presented many times to a state council that I’m on. He was able to connect me with the person who does one-time expenses, and later that day we received word that it was approved! The multiple connections that made it happen so quickly is remarkable.
As a person who has a significant physical disability that affects my speech, to say I’m proud of all the connections I’ve made would be a huge understatement. I realize that it takes some extra time and effort to communicate with me and get to know me. I’ve been beyond lucky to have so many incredible people who have done just that. Without all those connections, I wouldn’t be able to do anything. The connections have led to opportunities I never dreamed of. Everyone has different connections that influence their path in life. I’m incredibly fortunate to have so many connections that have led me to where I am today!
By Stacy Ellingen, 2023-03-05
“Stranger danger” is something parents teach their kids starting at a young age. Don’t talk to people who you don’t know. Never go with somebody you don’t know. Always tell an adult you know if a stranger tries to do something to you. The list goes on. Parents do this to try to protect their child. As kids grow up, they learn who are the people they can trust, and they develop a sense of people who may not be good to trust. As adults, we know right from wrong and, in most cases, have a pretty keen sense of who we can and cannot trust. Until we get to know a person, we often put a guard up when we’re around her/him. We’re careful about what we say and do. Depending on the circumstances, gaining trust can be challenging. For people with disabilities, trusting people is often a unique challenge.
As I’ve explained in many previous entries, I rely on assistance from caregivers to complete all of my basic needs every single day. Simply put, I depend on assistance from people to live. Having to so heavily rely on people, I often find myself constantly “on guard.” When you need assistance doing tasks you need to literally survive, you have no choice but to put a tremendous amount of trust in others. I didn’t realize it at the time because I was so wrapped up in the idea of going to college, but starting at Whitewater was when I first began really putting a lot of trust in people besides my family and friends. Not only did I have to trust that the care agency was going to find people to fill all of my shifts, I had to put complete trust in the workers who were assisting me (and when I first started, I didn’t even meet the person until their first shift). Granted, there were a few mishaps along the way, but, thinking back, I don’t remember having too many trust issues with people while I was in Whitewater. A big reason was because most of my workers were college students as well, so it was like I was just hanging out with friends.
After graduating college, I moved back in with my parents. As I’ve explained in previous entries, during that time, we tried having different care agencies come in. While it was uncomfortable for my parents to have people come into their home and do my cares, they understood it was what needed to happen. This was when we first realized what a struggle finding care was going to be. Not only did we have lots of no shows, but we also had some sketchy people coming in. I remember one time, a worker was making me dinner, and I saw her literally grab some lettuce from the bowl and eat it! Obviously, it was just lettuce and we had plenty of it, but it was more the point that she not only felt It was ok to sneak food, but she also thought she could eat while feeding me. If she felt it was ok to take food, what else would she have taken? There were some other issues with this person, so I had to tell the agency they couldn’t send her anymore. That’s just one example.
When I moved to Oshkosh, I started with a new agency. When you have new caregivers, your trust level always starts at zero. I’m always on guard until I get to know a person. I fortunately had pretty good luck with the first agency I had in Oshkosh. I’m not sure whether or not they did background checks, but the workers were pretty decent. If I had a problem with a with a worker, the agency would try to work with the person and I to resolve the issue, but, ultimately, if it wasn’t working out, the agency would take the worker off my schedule.
After five years with that agency, I had to switch to a different agency. This was truly when my trust radar heightened. I don’t know how to say this without sounding judgmental, but, after working with caregivers for so many years, I have an uncanny way of reading people. Within five minutes of meeting a caregiver, I can usually tell if the person is trustworthy or not. With the agency I switched to, none of the workers were what I consider trustworthy. However, because those workers were the only people the agency had to help me, I had no choice but to have them help me. Low and behold, my instincts were right. In the eight months I was with the agency, I had theft happen more than one. Being the curious person I am, I began looking the workers up on CCAP, and I was shocked what I found. The agency couldn’t have done background checks. Yet, these people were in my apartment with me alone. After eight months, I had had enough and switched to Self-Directed Personal Care through IRIS. The week before I left the agency, one of the workers who had the majority of my shift came in and told me that she had been just released from jail! That confirmed that I made the right decision to leave the agency.
Doing Self-Directed Personal Care, I’m able to hire the people I want. Before even interviewing people, I look each applicant up on CCAP to make sure they would pass the background check. When we interview people, I usually have a weird sense of whether or not the person is going to work out. However, unless there are multiple red flags during the interview, I usually have them fill out the paperwork and hire them. Given the caregiver shortage, I can’t be too picky. Unfortunately, many times after a training shift, people end up not working out. The training is hands-on so the person can experience what working with me physically entails. Another worker is here during the training to explain everything to the person.
While the veteran worker is explaining everything to the new person, I’m evaluating the person. I have to think about whether or not I’m going to feel safe and comfortable with the person alone. I should preface this by saying that the first couple of shifts are rough—they always are. However, during the training, I have to determine I’m going to be safe with the person. As hard as it is, I try to be very open-minded when people train. I have to remember that it’s just as uncomfortable for them as it is for me. I have to really try to read the person and decide if it’s going to work.
Most of the time, I usually try to give people the benefit of the doubt. However, sometimes, you have to trust your gut. I found myself in this situation a few weeks a few weeks ago. The person was one of the few applicants who applied and passed the background check. We interviewed her and had her fill out the paperwork. Again, looking back, I should have trusted my instincts, but it’s hard because I desperately need workers. After she was approved, she came to train and her true colors came out. She didn’t listen to anything the worker or I were saying. She kept wanting to leave on a break when I was in vulnerable situations (for example, she wanted to leave when I was on the toilet which would have been a disaster if she were alone and decided to leave—I have no way of opening the door or using the phone when I’m in the bathroom). She also randomly left for 45 minutes and had no idea where she was. Those coupled with some other pretty major red flags made me really question what to do. I desperately need workers, but is it worth jeopardizing my safety and causing me stress of wondering what would happen on her first shift alone? In this case, it wasn’t. I decided it was best to let her go.
Trusting caregivers to assist you with your personal needs is an interesting life many people with disabilities live. As vulnerable as I am not only needing assistance to complete my basic needs, but also being nonverbal, I have to put an enormous amount of trust in people who I don’t know very well. Over the years, I’ve learned what to let go and also when I need to take action to protect myself. Sometimes, it’s exhausting being “on guard” all of the time, but it’s what I have to do to remain as independent as possible!
By Stacy Ellingen, 2023-02-04
Being a starter on a sports team. Standing up in a wedding. Getting a promotion at work. Being asked to speak at a big event. What do these things have in common? Things such as these make an individual feel valued. Being valued is a psychological need of every single person on this earth. There are a million different ways to make a person feel valued, and what makes an individual feel that way varies from person-to-person. Feeling valued, wanted, and needed is essential to everybody. In today’s society, it’s especially important that people feel valued. People who have disabilities or health conditions are no different; we need and deserve to feel valued just like everybody else. In fact, sometimes, I believe people who have any sort of limitation have the need to feel more valued because, the truth is, society still doesn’t view us as equal.
“I know you’re busy, but I’d like to come visit with Parker a day next week. We won’t stay long. What day would work best?,” my sister recently texted me. Nearing the end of her maternity leave with my second nephew and wanting to visit my parents as well, she was trying to find a day to drive up. Having talked with my parents, they told her how busy I’ve recently become. After looking at my calendar and texting her back with the few days and times that’d work, I was talking with my mom and I said, “it’s weird that people have to schedule around my stuff. It’s usually vice versa.” What I mean by this is that I’m not used to being this busy.
As I’ve discussed in past entries, I’ve learned the hard way that my body can handle so much. A few years ago, I took on another very part-time job doing very similar things I do for InControl Wisconsin. People had reached out to me and encouraged me to apply. The fact that people thought that I had the right skills and would bring value to the organization meant so much to me. However, as I explained, a few months into the job, I ended up having emergency surgery. After doing my best to continue working while I recovered, I discovered that my body couldn’t handle it. Much to my dismay, after many doctor and hospital visits, I ended up resigning from the position. People totally understood, but it was really hard on me because I knew that people valued me and wanted me to do it.
That was nearly two years ago. Knock-on-wood, my health has vastly improved and I’ve been on a really good streak. Because of that, I’ve been able to participate in more activities and take on more responsibilities. I’m not sure of the reason, but it seems like in the past month or so, I’ve been fortunate to have been asked to participate in several different advocacy activities. With almost all of these opportunities, people reached out to me and asked me to participate in the particular activity because they thought I’d add value to the project. Due to timing, I had to say no to one or two of the things, but I’ve been able to do most of the opportunities.
Having people reach out to me because they think I bring value to something is an unexplainable feeling. Although, the perception of persons with disabilities has vastly improved, I still constantly feel the need to prove myself. As I’ve said before, being in a wheelchair, having involuntary movements, and being nonverbal, I know people make assumptions. I get it—I make them too. We all do. It’s human nature to. Admittedly, knowing this, makes me self-conscious and I find myself always trying to show people that, despite my physical challenges, I can accomplish things and be successful.
Knowing that people value who I am and what I do greatly boosts my confidence. It does for everyone, but, for people who have blatant stereotypes attached to them, being wanted and needed means a little more. Personally, as I’ve shared before, when I get discouraged or depressed because things aren’t going well or I can’t do something, my mom reminds me of all that I’ve accomplished and of all the people who value me. Honestly, depending on the situation, often I shrug it off because she’s my mom and she has to say those things; however, deep down, it helps to be reminded.
Being valued greatly improves one’s self-worth. Everybody benefits from getting a boost of confidence every once in a while. Have you made somebody feel valued recently? My challenge for you is to make a friend, family member, or colleague feel valued today. By doing so, there’s a strong possibility that you’ll feel more valued as well!
By Stacy Ellingen, 2023-01-15
$1.35 billon. That’s the amount of the recent Mega Millions jackpot. It has been all over the news because it has been awhile since anybody has won the jackpot. It has brought up the question: what would you do with a billion dollars? Obviously, everybody has a different answer to the question and there is no right or wrong answer. Responses to this question widely vary. While some people dream really big and have extravagant ideas, others are more conservative and think strategically. It’s an interesting question for everyone to ponder. For people with disabilities or those who rely on government programs, the thought of suddenly having that much money is almost daunting.
“It wouldn’t really be beneficial to me if I won the jackpot, “ I said to my parents a few years ago when one of the lottery games had an enormous jackpot. My dad disagreed and said yes it would. Since my parents and I always have the topic of my care on our minds, my dad explained that I could pay people decently to take care of me. We could hire and pay people decent wages to stay with me around the clock (while I don’t need 24/7 care right now, I’m realizing more and more how nice it’d be to have someone around to help me with things all the time). I agree, but I don’t think winning the lottery would solve all my care troubles.
What would I do with one billon dollars (ok, about 474 million after taxes)? That’s a very good question. It’s interesting to think about because while, yes, almost everything in my life would change, my needs wouldn’t. I’d still need caregivers to assist me with all my daily needs, I’d still need accessible housing of some sort, I’d still need medical professionals and other specialists to help me with my medical and equipment needs...the list goes on and on. Would I still be able to receive the services I need? Obviously and rightfully so, I’d be off all government assistance, but how would that work logically? Would I be kicked out of my income-based apartment right away? What would happen with all of my insurance things? Having so many needs, would I even be able to get private insurance? I’d be able to buy all the equipment, but would I still qualify for assistive technology support?
Now, I realize that even thinking about this is pretty silly—especially since I’ve never bought a lottery ticket—but, what is the first thing I’d do after winning the lottery? After contacting my immediate family (and probably going out for a nice dinner to celebrate), calling and meeting with a lawyer and financial advisor, I’d begin notifying government entities to try to figure out how to move forward. Next, I’d have to figure out a place to live. I don’t think there are too many accessible millionaire homes readily availability in this country, so I’d probably find a big condo in a big city and have it renovated. Then, assuming I’d be off my long-term care support, I’d have to figure out how I was going to do my care. Since I wouldn’t be limited by insurance, I’d probably seek out a nice home care (believe it or not, some do exist—it’s just that only accept certain insurance or private pay) to set up care. I’d buy an accessible van and hire and insure drivers to drive me everywhere. I’d have to figure out health insurance. Due to having a significant pre-existing condition, finding insurance maybe challenging, but I’d be able to afford a hefty insurance plan.
What would I do? Would I continue working? Probably not—at least not for pay. Would I continue to advocate? I can’t imagine that I wouldn’t because it’s who I am. After ensuring my family and I were set for life, I think I’d start donating my money. No idea how this would be possible, but I think I’d figure out a way to donate money to direct care workers.
It’s impossible to fathom having that much money. To most people, one billion isn’t really even a realistic number. Suddenly having that much money would drastically change anybody’s life. Persons with disabilities are no different; however, we might have some extra things to take into consideration. Being financially stable would definitely make life easier, but it likely wouldn’t solve all our problems. In some ways in may in fact create new ones. While the odds of winning a big lottery jackpot are extraordinarily low, it’s fun to daydream about what life would be like as a billionaire!
By Stacy Ellingen, 2022-12-01
What’s your name? What’s your date of birth? Please state your Social Security number. Questions such as these are commonly asked when people are setting up appointments, participating in important personal financial meetings, or completing other personal business. Most adults are able to answer these basic questions without even thinking about it. In this day in age, we have to make sure it’s a legitimate source we’re giving our personal information to, but, generally speaking, if it’s a credible source, people are able to verbally say their personal information when asked. People with disabilities and health conditions frequently have to provide personal information on a regular basis because it’s required in order to receive the services and supports they need to live a successful life.
“Please state your date of birth and Social security number,“ a lady from the Social security Administration said to me on a recent call to fill out the application for a benefit I’m going to soon qualify for. My parents were on the call too—in fact, my parents setup the call and were going to do it for me because we thought we had setup my mom as a representative for me so she could speak on my behalf (due to my communication barriers). It turned out that wasn’t the case. My dad called me on his phone, put me on speakerphone, and my mom put the lady on her phone on speakerphone so that we could hear each other.
After calling me, my parents thought that the lady would be able to ask me a simple yes/no question such as, “do you give your mom consent to speak on your behalf?” She eventually did ask that, but first she needed me to state my date of birth and Social Security number. My parents tried explaining think I use a communication app and type everything out—at this point, I was typing something out on my communication app to see if she could hear it. She could, so my parents explained that I could type out my birth date and Social Security number—it’d just take awhile. The lady agreed to wait while I typed them out. After that, she allowed me to give my mom consent to help answer the questions.
The application for this particular benefit was absolutely ridiculous! Not only did it ask for all of my financial information, it asked about all of my health history and capabilities. My parents were able to answer most of the questions and I chimed in with my communication app when needed. It took an hour to complete the application. It would have taken a lot longer if my parents hadn’t been able to help.
As I’ve discussed in previous entries, answering questions and having to tell people about your condition and limitations over and over isn’t easy--especially in this scenario where somewhere in the system there should be most of the information from previous benefit applications I’ve done. While I understand some health conditions change frequently, cerebral palsy doesn’t really change too much. People don’t like rehashing what happened to them or what they can’t do. It adds another layer to it when you need assistance completing the interview (yes, theoretically I could have answered each question by typing it out on my phone; however, there’s no way a person at Social Security would have time to wait—it’d literally take a full day to do). Thankfully, my parents are able and willing to help me with things like this, but I’m sure it isn’t easy for them either to explain my circumstances—again, we try not to dwell on my limitations.
In an ideal world, applications such as this would be able to be completed digitally. People would be able to fill it out on their own, do electronic signatures, and be able to communicate through an online portal if clarification is needed. It’ll be awhile, but I think things will become even more digitized. The need to answer those seemingly degrading questions about my circumstances will always be a part of my life, but I’m hopeful that as things become more digital, the need to verbally state personal information will decrease. For some people, having things become more digital has been an inconvenience; however, for people like myself, it has been amazing—I can’t wait for more opportunities to be available digitally!