Stacy Ellingen

Category: Stacy's Journal

A hang nail. A sprained ankle. An ear infection. Nasal congestion. Influenza A or B. There are literally thousands of different types of health issues that human beings could have. Some people are born with them; while others are acquired. Many health issues short term, while others are lifelong. Some conditions degenerative meaning symptoms get worse over course of one’s life. Others are not degenerative—the condition doesn’t get worse. Some issues have a simple fix; while others are very complex requiring a huge amount of medical interventions. Many conditions are curable; while others are unfortunately terminal. It’s likely that every single person has experienced some sort of health problem in their lifetime. It’s just part of life-people get sick and injuries are going to happen. Often, people who have disabilities experience multiple health related issues. Whether the disability is congenital or acquired, many people experience numerous medical problems during life.

“You sure know your body,” my mom said after leaving Urgent Care recently one Sunday. Admittedly, I feel like a little kid sharing this, but I somehow ended up with an ear infection of all things. In many previous journal entries, I’ve written about the ongoing medical issues I deal with. Theoretically, cerebral palsy is non-degenerative; however, due to the strain it causes on the body, we do age faster than the average person. For reasons we’ll never know, my body has taken a beating the last decade and a half or so. So much so that my parents often get frustrated when I tell them that I have another issue going on. I know that they see me as more of a hypochondriac in recent years, but I don’t blame them–it has been a lot.

When I feel the slightest ailment or change in my body, I always let people know about it right away. There are a couple reasons I do this. First and foremost, the slightest ailment or change in my body usually throws my muscle tone completely off making things take even longer for me to do. Second, if something were to happen where I was no longer able to communicate, I want to make sure people had a heads up about whatever was going on. That sounds very dramatic, but, in my circumstances, it’s about safety. An example being if I feel sick to my stomach before I go to bed, I always tell my mom so that if I text or call her in the middle of the night, she’ll know that I got sick and need help. Admittedly, I have to be careful with this one because it has backfired on me, but another reason why I tell my workers if I’m not feeling well is so that they can choose to glove up and wear a mask. It’s common courtesy to do that.

Another reason why I may seem hyper vigilant is because I have so many people who helping me with personal cares. Often, especially when I have nursing students or CNAs, workers notice a change or ailment on my body that I didn’t even realize. Of course, they make me aware of the issues which I’m grateful for, but then I’m obligated to do something about it. Most people ignore an ailment until it becomes bothersome; however, many times I can’t do that because I have people suggesting I do something about it.

After nine surgeries, multiple ER/Urgent Care visits, and numerous nights in the hospital in the last decade or so, I have a pretty keen sense of when I need to be seen by medical professionals. After five emergency gastrointestinal surgeries, I know the specific pain and when I have that, there is no messing around – I need to get to the emergency room right away. I also have a pretty good sense with other ailments too. I won’t go into specifics, but I’ve had dealt with quite a few other health issues in the last few years as well. For reasons beyond me, I have also been able to gauge the severity of those pretty accurately. I’m able to tell whether or not I need to be seen by a doctor or if I will be able to treat it with assistance from caregivers. If I need to be seen by a doctor, I’m able to differentiate between the need to go to the emergency room as opposed to going to Urgent Care or making an appointment at a regular doctor’s office. It differs from family to family, but I was brought up understanding that the emergency rooms are only meant for life-or-death circumstances. I’ve found myself in those circumstances too many times. Mainly because of gastrointestinal issues, but there have been a couple issues related to cerebral palsy that landed me in the in the emergency room. In most of these cases, doctors sent me there so I could get immediate tests for whatever symptom I was having.  Obviously, the symptoms were greatly impacting my life and couldn’t wait for appointments to open up or insurance pre-approvals.

I really try not to be overly dramatic about my health, but it’s hard not to be. Given I have to balance so many different factors, I’d rather be safe than sorry. My instincts have been right 99% of the time. While I don’t like being seen as overly dramatic sometimes, I’ve learned to trust my gut when it comes to my health. My uncanny instinct has saved my life more than once!

***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.

Stacy's Journal: It's OK to Say No

By Stacy Ellingen, 2024-01-16

Can you present to this group? Could you write an article about it? Would you be able to attend this meeting? Could you speak to that group? Are you available to do this? Could you do that? Questions such as these consume our daily lives. Being asked to do certain things and asking others to do things is part of life. Like it or not, humans depend on one another to live. People have a choice whether or not to oblige to the task that they are being asked to do. Depending on the situation, individuals often perform the duty that they’re being asked out of respect for the person who is asking. It may be an employer asking an employee to a task, a family member asking you to do something, or a friend asking you for a favor. Whatever the case may be, you have a choice whether or not to do it. Sometimes, people have a hard time saying no when others ask them to do something. Most of the time, people enjoy helping others and being valued, so turning down an opportunity can be difficult. People who have different abilities are no different—we have a hard time turning down opportunities just like everyone else. The truth is that people who have some limitations probably have a more difficult time saying no to things than the average person because often we can’t do a lot of things due to our circumstances; so, when we’re asked to do something that we’re able to do, we feel immense pressure to say yes.

“I’m going to try to be very intentional about what I say yes to this year,” I said to my mom one night recently. She rolled her eyes and laughed because she knows how hard it is for me to turn down an opportunity. In past journal entries, I’ve written about the importance of feeling valued. Especially when you have some unique challenges, being and feeling valued is a detrimental part of life. However, it’s also equally important to realize when you’re spreading yourself too thin. I also wrote entries about this in years past—often, I say yes to too many things which puts a lot of stress on my body. It’s a fact that everything takes me a lot longer to do things than the average person. Years ago, I read that people who have cerebral palsy exert three times the amount of energy than the average person does.

During a session a few weeks ago, I was telling my counselor about how frustrating it was to be gone from work for so long over the holidays. I explained the situation to her. She then asked me a very good question: why do you hate missing out on work and advocacy so much? I told her it had nothing to do with the financial aspect of it. As we talked more, she figured out that work and advocacy are the things that make me feel valued most. In other words, I often feel useless when I’m not doing some sort of work or partaking in an advocacy activity. Obviously, learning this opened up a whole other thing to work on in counseling, but, in the weeks since, I’ve been really trying not to keep myself busy with work or advocacy projects all the time. I didn’t realize how much I relied on those things to keep me busy.

As I get older, I’m slowly realizing that there’s more to life than always trying to prove that you’re successful. As a person with a significant disability, that’s kind of a tough thing to grasp. I’m always trying to prove that I’m a contributing member of society and my main way of doing that is to engage in as many advocacy activities as possible. However, with some help, I’m realizing that I have other things that people value me for. I’m also learning that it’s okay to take some time to do nothing.

I’ve already turned down two advocacy opportunities this year. They were events that would have taken me hours to prepare for and I honestly didn’t have much interest in either of them. Will I agree to do various advocacy things? Absolutely. I love advocating and helping people. I just have to be selective about what and how much I agree to do. I’m going to try my best to be cognizant of how much I put on my plate. It’s not worth the stress and repercussions it causes.

For some people, turning down opportunities or saying no to things is really hard to do, but life is too short to overwork and stress yourself out. It’s just not worth it!

***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.


Stacy's Journal: Out of Control

By Stacy Ellingen, 2023-12-01

Flight delays. Car accidents.  Long lines for the checkout at the grocery store. Traffic jams on a busy highway. Noisy neighbors. Delays in processing orders. Not getting responses to important emails in a timely manner. What do all these things have in common? They are things that people can’t control. Obviously, there are millions of things in life that people have no control over. In many cases, people try to intervene to make whatever it is work for them, but there are several things that we, as humans, ultimately can’t control. Depending on the circumstances, things that are out of our control can evoke a gamut of emotions. Frustration, sadness, fear, anxiousness… the list goes on and on. People have different reactions to circumstances that they can’t control. Some people get really mad and distraught; while others are more rational and can understand that it is what it is. People who have disabilities are no different. We encounter many things that are out of our control—in fact, I’d argue that we face more things that are out of our control than the average person does.

“I can’t do anything about it” is a phrase my grandma always used to say when she didn’t like something or didn’t agree with a situation that was happening. We’d chuckle because she said it quite a bit and it became a bit of a game of guessing how many times she’d say it during a family gathering. As I get older, I think back and smile because she was right—there are so many things that we can’t do anything about. As I explained in past journal entries, right from the start, a fluke accident occurred during my birth that changed the trajectory of my family’s life forever. My parents and I didn’t have any control over what happened, but that mishap will affect our lives forever. When I was diagnosed with Spastic Athetoid Cerebral Palsy and my parents learned that I’d have uncontrollable movements, nobody could control that. I deal with those movements every hour of every day.

There are many other examples of things that people with disabilities simply have no control over. The overall long-term care system is probably the most prominent example. Of course, there are many different facets to this, and yes, we have some “choice”; however, ultimately, for many people, the government really controls our lives. When it comes down to it, the government decides how much care a person receives. Sure, we advocate and sometimes are able to get some more, but we really don’t have control over it. Same goes for things like financial limits. Yes, we have a choice whether or not to receive benefits; however, the limits make it nearly impossible to gain meaningful employment and still receive the crucial services that they need to survive.

Housing waiting lists are another thing that most people have no control over. Due to some changes that took place about two years ago, the apartment complex that I live in isn’t the best. Cops and paramedics are here multiple times a week, and getting a full night’s sleep is a rarity. Again, these things are completely out of my control, but they really affect me. I’ve been on the waiting list for another subsidized apartment complex for over a year. At one point in summer, I was at the top of the list and an accessible apartment was available, but then I got bumped out due to someone else needing the apartment because of a domestic violence situation. Of course, I understand why I was bumped, but my mom called about a month ago just to make sure I was still on the list, and we learned that I’m in the middle of the list. The Housing Authority has a weird way of prioritizing people. It’s another thing that is out of my control, but, yet, it really affects me.

Something else that affects me, but is out of my control is when my fiscal employment agency doesn’t pay my workers. This has happened very frequently in the last year. Each time a time period ends, I always approve the shifts right away. For whatever reason, we have had problems with workers not getting paid on multiple occasions. This is so incredibly frustrating because workers come to me, but there’s nothing I can do except for to continue to contact the fiscal agency. Recently, I’ve taken further action to hopefully mitigate this from happening so often, but, again, ultimately, as much as I’d love to, I can’t pay my workers when the agency messes up. Luckily, the workers I have now have been very understanding and patient, but I’ve lost workers in the past due to this. It’s unbelievably frustrating when there is nothing I can do about it.

I understand that there are millions of things that we have no control over. Admittedly, when so many things that are out of my control stack up, I lose patience. Thanks to counseling and supportive family and friends, I’m slowly learning how to be ok with things I have no control over. When things come up, I try to think of my grandma saying, “I can’t do anything about it.”  I should know grandmas always have the best words of wisdom!

***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.

Stacy's Journal: Life's Adjustments

By Stacy Ellingen, 2023-11-04

Sleeping on a new mattress. Wearing new shoes. Switching your work schedule. Learning a new piece of technology. There are millions of things that people have to adjust to. Making adjustments is part of life. We make hundreds of adjustments every day. Most of the time, we don’t even realize we’re doing it. When was the last time you actually thought about pulling your shirt sleeve down? You don’t think about it; you just do it. Some adjustments take more time to get used to. Things such as getting a new vehicle or charging your daily routine may take longer to get used to. People have various reactions to change. Some people have no problem adjusting to change; while others have a difficult time. Like everyone else, people with disabilities have various reactions to change. Generally speaking, many of us are so routine based, so often we have a hard time adjusting to change.

A few months ago, I did a journal entry about specific preferences. I want to be clear that, in my opinion, change and preference are two different things. Preferences are things that are unique to you. Change is something you have to do or face. Depending on the situation, change can be good or bad. It doesn’t matter what it is, when changes occur that affect us, we have to adjust. Adjustments may be physical, mental, emotional, spiritual, or a combination of these.

Recently, I had several seemingly minor adjustments done to my wheelchair. It’s only just over a year old, but, for whatever reason, I wasn’t sitting up straight and the seat belt was causing pressure sores on my hip. Of course, it took several months to figure out what needs to be done, get Medicaid approvals, and get the parts. As I explained in a previous entry, my wheelchair guy is great about working with me. Last week, he came to my apartment late one afternoon and did all the repairs. Admittedly, I wasn’t prepared for the big change. Honestly, I thought he was only going to fix some little things on the chair. I was wrong. He ended up spending over two hours at my place making all the adjustments. Thankfully, I had a shift during that time, so my worker helped me transfer in and out of the chair. He made all the adjustments and made sure it was right for my body. He left and I then realized what an adjustment it was going to be. Due to my spasticity, my muscles are very rigid. Once I find a comfortable and functional way to do something, my muscles don’t like when we change it. In fact, my spasticity kicks in and fights the position. In this case, I had a lateral (which holds me up straight) moved in a couple inches so that my body wouldn’t tilt to one side as much. Being more upright is great for my posture and looks better, but, let me tell you, my muscles don’t like it! I am having to try to figure out how to do everything in the new position. It’s very difficult and painful. It’s also frustrating because I want to be able to do everything like I used to. I’m trying to remember that it takes my body a long time to time to adjust. It will get easier in time. Changes like this are physically and mentally tough, but it needs to happen for my physical health.

I face adjustments every time I have a new caregiver. Yes, we train people the same way; however, everyone does things just a little different and that’s okay. Obviously, I ask people to it how I like it if it’s something important, but when someone does something that is minor a little different than others do, I usually just go with it. I understand that people have different ways of doing things.  I just have to get used to how each person does things. It’s a unique part of my life.

Another adjustment I frequently have to make is with my schedule. As I’ve explained in previous entries, I live a very scheduled life. Having to rely on the assistance from caregivers, I have no choice but to schedule everything from getting out of bed each morning, to eating and using the restroom, to getting back into bed each night. I have scheduled shifts, but often, due to the availability of caregivers, I have to adjust to different times than what I prefer. While this usually isn't a big deal, as silly as it sounds, I have to adjust the times and how much water I drink. As minute as it sounds, it’s an important adjustment I constantly have to make.

As I said, we make hundreds of adjustments every single day. While most of them may not have significant impact, some of them do. Everyone reacts to adjustments differently. Sometimes, it’s challenging to adjust to different things or situations, but that’s kind of what life is—we have to adjust to every circumstance as it comes!

***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.

Stacy's Journal: Find Joy in the Journey

By Stacy Ellingen, 2023-10-13

A bad day at work. A car accident. A bad breakup. A medical diagnosis. A court trial. There are millions of things that cause stress and anxiety. Stress is part of everyday life. There is also good stress like weddings and birth of children. Everyone handles stress differently. Some people thrive under stress; while others get physically ill. There are many different ways to deal with stress and anxiety. Everything from keeping it to one’s self to receiving in-patient psychiatric treatment. People with disabilities often deal with stress and anxiety just like everyone else—in fact, I would bet we have more stress and anxiety than the average person.

A few years ago, I wrote an entry about mental health. Back then, I was taking a small dose of a medication for anxiety and depression. Long story short, I ended up getting off that medication because it was causing issues with my muscle spasticity. At the time, my physical well being was more important than any mental health issues I had. I leaned on family and friends for emotional support and I was relatively fine for a few years.

“Find joy in the journey.” “Broken crayons still color.” Those are two of the signs that I have on the wall in my kitchen. I look at them every time I eat at my kitchen table. Anyone who knows me knows that I love cheesy signs, but those two saying have really resignated with me the past few months.

I won’t go into detail, but 2023 hasn’t been the best for my family. It seems like one thing after another has happened. Each of these things have put stress on the entire family. Unlike most adults my age, I don’t have a significant other to lean on during hard times. I of course have my family members, but they have their own thoughts and emotions to deal with. The last thing I wanted to do was to put my emotions on their plates.

At the end of April, I decided I needed to seek some help. I made an anonymous post on the Wisconsin Disability Connections Facebook page asking if anyone knew of a virtual counseling firm that billed Medicaid. I was referred to a website that had all sorts of resources. Through email and texting, I was able to get in touch with a virtual counseling firm that billed Medicaid. The owner was very accommodating and worked to set everything up through email. I was linked with a counselor and have been working with her since the beginning of May. Since it’s virtual, I type to her in the chat box using my eye gaze system. It’s a pretty unique situation, but I’m so thankful I found someone willing to work with me.

As it turns out, I probably should have reached out years ago as I’ve learned that I’ve had anxiety and depression for years. Having someone to talk with and sort things through with has really helped. I’ve learned lots of techniques and skills to help deal with the things that are happening in life. I’ve learned that my feelings are valid and it’s okay to have those feelings. I obviously won’t share everything we work on, but one of my weaknesses is self-compassion. Needing assistance with my basic needs combined with the caregiver crisis, I often feel like a burden to my family—especially when another situation is happening. My counselor is helping me understand that while, yes, I may feel like a burden, a lot of things are out of my control. My family wants to help me because they love me. We’re also working on “radical acceptance.” Basically, acceptance what is because I have no control over it. This has been especially helpful with the caregiver situation. Instead of blaming myself for needing care (and don’t have enough workers), I’m working on accepting it as just a fact and trying not to bring emotion into the situation.

Another thing that my counselor has been working with me on is initiation. I have a hard time asking people to do anything social because I hate obligating people. This is especially true as I’ve gotten older because I know my friends have families of their own. I feel like when I ask people to do anything I’m obligating them especially because they know that I don’t have many opportunities to socialize. I don’t want them to feel bad if they can’t. My counselor keeps reminding me that people will say no if they can’t. Albeit, not often, but I’m getting better at initiating social opportunities.

I’m also learning to reach out to friends when I need emotional support. Again, I hate bothering anyone, so my counselor has been challenging me to reach out to a couple friends to talk with. Of course, the couple friends I’ve reached out to have been understanding and very supportive. This has been really helpful. Very thankful to have such great friends!

Like most people, at first, I didn’t tell anyone I was in counseling because I was embarrassed. In fact, I didn’t even tell my mom I did it until I filled out forms and had to list her as my emergency contact. I thought people would see me as weak and needy when they found out that I am seeing a counselor; however, I’m slowly realizing and accepting it is actually kind of a strength. Admittedly, I don’t fully see it as something positive yet, but I’m seeing the benefits it has had. Most people don’t even notice (and that’s a good thing), but I’ve made great progress since May. Most importantly, I feel better!

I certainly hope that things will settle down a little bit for my family, but, as my mom always says “it’s our journey.” Everyone has some amount of stress and anxiety. It’s life. It’s perfectly okay to reach out for a little help if life gets to be too much. Do it for yourself, so you can find joy in your journey!

***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.

Stacy's Journal: Talk Your Ear Off!

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.


Stacy's Journal: Disability Pride

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.

Stacy's Journal: Affirmative Action

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.

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!

***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.

Stacy's Journal: 20 Years Later

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!

***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.

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