A faulty appliance. An event that flopped. A trial of a service that didn’t work out. A test-run of something that failed. There are all sorts of situations where something didn’t go as planned or hoped. In most scenarios, the problem can be fixed or there are other options available. When something doesn’t work out as one expected or hoped, it can be frustrating. Regardless of what it is, people usually aren’t happy about something going wrong. Everybody feels that way, and people with disabilities are no different.   We experience the same emotions everyone else does when things don’t go right.

In my journal entry last month, I explained how two big life changes were happening at the same time—I was moving into a new apartment and I had started with a care agency. The move went well and I absolutely love my apartment. Unfortunately, I can’t say the same for the agency. Going into it, I was prepared for challenges because I had gone through this process a couple times before.  The last two months were simply put, a nightmare.

As I previously mentioned, I was moving from part-time to an agency covering nearly full time, with two eight hour shifts. In early September, the agency promised to staff 16 hours daily, and this was to begin the first week of October.  A budget amendment had to be completed for more supportive home care hours, and this took time to get approved. Then I had to be rescreened for personal care hours.  This was a huge waste of time because, I had to be rescreened for the services I already had….hoops to jump through in this process.  Meanwhile, the agency was posting and hiring people specifically for my cares. Their plan was to hire four people, two on day shifts and two on afternoon-evening shifts.  Needless to say, that never happened.  We set up a training day for three people, only two of whom showed up.  Looking back, that should have been the first red flag. The plan was to have people hired to become “trainers of new staff.” We finally figured out a start date, and at that time, I was asked to release all my old faithful aides, some of whom had worked for me for over seven years.

Now to the staff that was hired.  The two initially trained were very capable and did have some experience, however we shortly found out that one was due to have surgery as well as going on vacation and the other had no way of getting to my place on time.  The third person hired had experience but I was forced to report her for hygiene issues and both she and I felt that she was not able to handle my needs.  Next, the agency was going to try to fill shifts with two people who had residential experience, but were only going to be fill-ins once in a while.  So, in the first two weeks starting, they only had two people, and only two days were fully staffed of those 14 days.  This meant that my parents came up there daily either to fill those shifts- they even stayed overnight a couple times due to consecutive days not being filled.  Admittedly, I was ready to switch back after a day or two, but we felt we had to give them a chance and at least a month or month and a half to prove to us that they could do this.  There were literally over a hundred phone calls between my mom and the personnel director as to what was going on each day. The next three weeks were no different.  I would go to my parents’ home when the agency couldn’t fill shifts, so in that time, only two more days were completely staffed.  Therefore, in a bit over a month, only four days were staffed, and either my parents came up or I would go to their home. The final straw was when one of the two initial hires called in sick four nights in a row, and they couldn’t find anyone to staff those shifts. Enough was enough, promises made were not kept! My parents and I made the decision to dismiss the agency and to go back to hiring our own people.  Even though we knew it would be a lot to go back, we all slept better that night, knowing we were back in control.

Basically, we knew this would be like starting all over again, but I didn’t realize how long it would take to switch back.  Everything from getting the personal care screen released from the agency to completing a new rescreening, to getting doctor’s orders, and budget amendments- it’s been another month of waiting. 

I contacted my old workers, and, thankfully, a couple were willing to come back.  Now, we are in the process of interviewing and hiring new people again.  I’m hoping by early January that I’m able to stay and enjoy my new apartment for more than two nights in a row!

What did we learn from this fiasco? When something sounds too good to be true, it probably is. Second, the long-term care system continues to have roadblocks whether you’re working with an agency or hiring your own aides.  Third, be grateful for the support system you have with family and/or friends! Finally, this experience just amplifies the need to continue to advocate for a better overall system in 2025 and beyond!

***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.

Getting married. Having a child. Switching careers. Moving to a different state. What do all of these things have in common? They are big changes to a person’s life. Any monumental change in life usually causes some sort of stress in people’s lives. The anticipation of whatever it is can bring on all sorts of emotions such as excitement, fear, and nervousness. For people living with disabilities, the monumental changes may sometimes look a little different, but we definitely still experience them. Change is hard for everyone—no matter what your circumstances are.

What happens when two major life changes happen at the same time? To put it bluntly, it’s pure chaos! For those who know me personally, they know how hectic the last couple months, actually years, have been for me. I’m not going to go into everything that has happened, but I’ll discuss the two big things that have been going on the last two months. To the average person, these two things probably won’t seem like a big deal, but, in my world, they’re life-changing. By the end of November, my entire life will be totally different than how it was at the beginning of October. Let me explain.

A little back story. Over a year ago, for various reasons, doctors recommended 24-hour care for me. There was no way I would be able to staff that by myself, so we had to find an agency. Really long story, there’s only one agency in my area that could possibly take me on. I had been on their waiting list since last October. We’d check in with them every few months to see where I was on the list. Well, between July and September, my care team (who I hired) basically fell apart. I unexpectedly lost five or six workers starting in June, and it became very apparent that something needed to change. I had a couple of great workers who stuck with me and tried to fill as much as they could, but we just couldn’t continue doing it. I was at my parents most of the time. We contacted the agency, and we finally connected with the right people and found out that that they were ready to take me on. The agency would staff 16 hours to start with, so I had to get a budget amendment approved which was a process in and of itself. I had to let the workers I still had know what was going on. That was a hard thing to do because some of them became good friends, but, thankfully, they understood. The original date the agency had given us ended up not working out for them, so I was at my parents another week while they supposedly straightened everything out.

I’ve transitioned to different care agencies or models a couple times before, so I knew what to expect and how rocky things would probably be. To say that it’s been an adjustment would be a huge understatement. Starting with all new people is hard –period. I don’t like using this limitation often, but, when you aren’t able to communicate verbally, it adds another whole layer. I have step-by-step instructions for everything I need done, but there are many in-the-moment things that can’t be explained in writing. In my case, hands-on training is an absolute must. My mom did a whole day training with two of the workers, and the intention was for those two workers to train others. So far, that hasn’t been working too well, but we’re really trying to give them a chance. At the time of writing this article, I’ve been with them for about three weeks, and my parents have had to come up about 95% of the days for one reason or another. It’s been pretty crazy to say the least, but things have gotten a little better over time.

Having someone with me all day has been an interesting adjustment as well. For years, I was by myself from 9a.m. to 4p.m. I tried to feed myself finger foods for lunch and didn’t use the restroom for about nine hours. Obviously, this was a huge reason why doctors recommended more care. It’s been an adjustment, though. Having someone at my apartment while I work is new to me. I’ll probably write about in detail in another entry, but, as challenging as it is, it’s also so much healthier and safer for me. In time, once things get settled, I hope to be able to go into the community a lot more since someone will be with me all the time. Right now, having an agency is a lot more stress than doing it on my own, but, eventually, it should be a lot less stressful for my family and I. That’s the goal.

I’m also moving in less than two weeks. In a previous entry awhile ago, I explained how I was on a waiting list for a different apartment for over two years. Well, low and behold, we learned that my name was at the top of list again. This time, we were able to do the intake meeting, and, about a week later, I received a call saying that three apartments were open. My parents and I set up a time to look at them. We looked at all three to determine which one would work best. We thought one would work pretty well, so I took the leap and signed the contract. Now, moving is stressful for anyone, but, when you need accommodations, it adds another level! This apartment building has an inner doorway and tenants have to buzz people in using an intercom system. There is an intercom in each unit, but the problem is that I won’t be able to reach it from my bed in the morning to let my caregiver in. We are trying to figure out the best solution to that. An electronic door has to be installed on my actual apartment as well. Among other less major things, it’s a lot to figure out in a short amount of time.  My current apartment still has a lot of issues, and the new place will be much safer and less stressful for me. I’m beyond excited to move, but it’s a lot of stress trying to figure everything out.

Do I wish both major changes wouldn’t coincide with one another? Absolutely. The amount of stress that this has put on my parents is palpable, but that seems to be how life works—everything happens at once. I’m so grateful that my parents are able and willing to help me figure everything out. I’ll write about both of these changes in more detail in upcoming entries.

“Next year will be your year,” friends kept telling me when I confided to all that has been going on the past couple of years. Moving and getting cares figured out have been on top of my personal to-do list for awhile. Due to other things that have happened in my personal life, I won’t be able to say that 2024 has been the greatest year; however, I’m hopeful that this is the start of a great stretch of good things to come for me and my family!

***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.

A hug from your child. A text message from your teenage son saying “I love you, mom.” Going to your daughter’s soccer game. Taking your kids to Disneyland. Having your little one run to you when you pick them up from school or daycare. Watching your child giggle at something funny. What do all of these things have in common? These are events that commonly bring adults my age joy. Most parents don’t even realize how often they get that little jolt of joy, but it usually happens multiple times a day. Kids have a way of bringing a little joy into the world even on your worst days. What happens when people aren’t able to have kids? At times, it’s not easy to do, but speaking for myself, I try to live vicariously through my sister and friends who have kids. For people with significant physical limitations, interacting with small kids is always a little bit of a gamble.

“Stacy,” with emphasis on the C ("Stay Ceeeee"), my almost two-year-old nephew squealed over FaceTime while his four-year-old brother anxiously waited to show me the school bus he had just drawn. With that five-minute FaceTime call, no matter how bad my day had been, it was made! A few years ago—I guess about four years ago now—I wrote about the yearning to be a mother. My sister had just had her first baby and I had become an aunt. I didn’t know how my nephew would interact with me. I didn’t know what to expect. Would he be scared of me? Not being able to talk or physically take care of him like many aunties do, how could I form a relationship with him? What would that look like? Questions like these swirled in my head.

Four years later and another little adorable nephew (if I do say so myself) added to the mix, I can tell you that those two little boys are the apples of my eye. Being an aunt is awesome. Like with some of my friends’ kids, since they never knew any different, my nephews just know me as Aunt Stacy. Do they realize I’m a little different than most people? Of course they do. Honestly, I think they realized something was different about me when they were just a few months old, but they’re still too young to articulate the questions.

My four-year-old nephew may be starting to ask questions about me to my sister and brother-in-law, but, so far, in front of me, he hasn’t really asked about why I’m different. I know he will and I want him to ask all the questions he has. Of course, the depth of our answers will depend on his age. For a couple years, telling him that I was born this way will be sufficient for him. When he gets older, we’ll introduce the term cerebral palsy and explain what it is. Will we ever share my birth story with him? Probably eventually way down the road, but we’ll wait until he asks.

Are my nephews afraid of me? That’s a difficult question to answer. When it’s been a while since they’ve seen me in-person, when they initially see me, they often step back and shy away. While I understand that they’re just not used to seeing someone with a significant physical disability, admittedly, it stings a little. Usually, with some prompting and coaxing from other adults, the boys warm up pretty fast and I can get a fist bump or a high five. If I’m around them long enough, I sometimes can even get a hug! It just depends on the scenario. I know this will get better with age and they’ll be less and less timid.

While I may not be able to do traditional things aunts do like babysit or take them on fun adventures, I continue to find ways to interact with my nephews. Whether it’d be giving them rides on back of my wheelchair, having them help open my birthday gifts, or giving them high fives, I cherish every little interaction I have with the boys because not only does it fill my heart with joy, I also know it helps them understand who I am. Right now, they are at the age where ramps are pretty cool, so they love it when I come visit because my sister and brother-in-law set up a portable ramp so I can get in the house with my power chair, and the kids love riding their bikes up and down the ramps.  They also enjoy running up and down the ramp in our van. Things like this are unique to having an aunt who has physical limitations.

Will my nephews be accepting to people with disabilities because they have me in their lives? I can’t say for sure, but I hope so. Will my relationship with the kids be different from the typical aunt? Yes, but know what? That’s okay. I know the exorbitant amount of joy they bring to my life; I only hope that I can bring a jolt of joy to theirs!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

Can we go out for dinner? Let’s meet for lunch. Can we meet at the park for a play date? Let’s take the kids to the museum. Want to meet at the beach? What do all these things have in common? They are things peers my age say to one another. Socialization changes as we age. In our high school and college years, kids pretty much live life around their social calendars. Meeting up with friends is top priority when people are in their teens and early twenties. After college, people often start their careers and find their significant others. During that stage of life, people still socialize with friends, but it’s often as couples. After a couple years, it turns into families meeting up to do something with the kids. Occasionally, parents have “date nights” with other couples, but, for the most part, socialization for people my age usually revolves around couples events or families getting together. What happens when you don’t have a significant other and kids, but, yet, want and need to socialize with friends? People with disabilities often struggle with this. Not only do many of us have physical barriers such as transportation and needing caregivers to assist us, to deal with, we often face psychological issues. When you don’t have a significant other or a family of your own combined with having physical barriers, it’s challenging to find opportunities to socialize. You often have to be the one to initiate and plan the gathering.

When I started college at UW-Whitewater, I wasn’t even thinking about how I’d make friends or socialize because I had so many other logistical things (cares, classes, accommodations, etc…) to worry about. As I’ve discussed in previous entries, I made friends in college just by hanging out with people. Back then, I had five care shifts a day, so I potentially hung out with five different college students a day. While we probably were supposed to, I developed friendships with most of them, and they introduced me to their friends. Before I knew it, by the second or third week of my first year of college, I had a bunch of new friends and was rarely in my room on weekends because I was hanging out with people. I didn’t realize it back then, but, looking back, it was really neat because I wasn’t the one initiating it most of the time. People asked me to do things.  To be honest, a lot of the time, my care shifts wouldn’t be at the scheduled times because we’d just be hanging out and my friends would just help me whenever I needed it. Obviously, I tried to be cognizant of their time and I tried not to “use” them, but it wasn’t a big deal to them if I needed something outside of my normal shift time. Because of this, I truly felt like a “normal” college kid because I was with my friends all the time. I socialized just like everyone else did—I was extremely lucky to have amazing friends!

It wasn’t until after I graduated from college that I realized just how difficult socializing as an adult was going to be.  There are several different factors that contribute to this. The biggest factor probably being that people are busy. After college, most people start their “real” lives. Most of my friends started their careers, found their significant others, and started families. This is the normal progression of life. Do I still see them and talk with them? Of course I do, but it’s not on a regular basis. Understandably and rightly so, their priorities have changed.

Another big factor is that I lead a totally different life than most of my closest friends. While they’re worrying about their kid’s next t-ball game or gymnastics practice, I’m worrying about if my care shifts are covered for the next day. I don’t use this example to provoke pity or anything: rather, it just shows how different our lives have become. Getting together is just different now than it was when we were younger. Instead of meeting for dinner and drinks at a sports bar, we meet at a park or zoo, so the kids can play.

Transportation and my care schedule also play a big role in my ability to socialize. None of my close friends live in Oshkosh, so either they have to come up here or I have to find a way to get to Fondy or Milwaukee where they live. This often presents quite a challenge because understandably my friends aren’t able to make the trip very often, and it’s difficult for me to find a ride out of town.  I have to coordinate caregivers as well. While most of my friends have helped me out with many of my personal cares in the past, I don’t feel like it’s appropriate to have them help me when we’re just hanging out—especially now that they have kids. When we get together, I have to make sure that I have a decent caregiver with me who not only will be able to physically, but also will be able to assist me with keeping the conversation going. Don’t get me wrong, my friends know how to communicate with me, but sometimes it’s nice to have a person with me who knows me so well that she can help fill in the gaps rather than waiting for me to type it out. Needing a caregiver with me really limits my availability for hang out with friends currently.

Having said all that, in late June, my counselor challenged me to get together with friends a couple of times in July. Due to some different circumstances going on, she knows that I can’t travel to see friends like I often do in summer. This meant I’d have to ask people to come to Oshkosh. As I’ve said in previous entries, I’m very uncomfortable doing this because I hate obligating people. I feel bad that I can’t just meet my friends wherever whenever. In order for me to participate in a get together with friends, I have to plan it weeks in advance so that I have all of my ducks in a row, so to speak. It’s challenging, but know what? I did it. Thanks to my amazing friends, I have four separate get-togethers planned this month! I’m so excited! Did I overdo it? Perhaps, but I’m so looking forward to seeing so many friends.

Socialization is a crucial part of life for everyone. There are many different barriers that can make it hard; however, as long as you have great friends like I do, no amount of roadblocks will ever prevent you from seeing your closet friends!

***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.

Batman. Superman. Spiderman. Elsa. Belle. Monana. Whichever fictional character it may be, kids often idolize a specific character starting at a young age. As kids get older, those characters switch from fictional people to real-life superstars. Often, teens and young adults have obsession over a famous celebrity or athlete. Whoever the famous person may be, people often look up to her/him because she/he has had a positive influence on their lives. Celebrities and famous people are often referred to as superheroes. Whether we admit it or not, every single person in the world likely has a superhero that they look up to. People with disabilities are no different. Our superheroes may be different than the normal celebrities people commonly think of, but that’s because we often have a different perspective on life.

A few years ago, I wrote about the heroes in my life. I talked about how my family and friends are my heroes. I explained how I consider the assistant who I was blessed to have from second grade through 12^th grade to be one of my heroes. All of my family members, especially my mom, dad, and sister, are my forever superheroes because they’ve rallied around me and supported me literally since day one. I wouldn’t be anything without their continued steadfast love and support.

While that journal entry still holds true today (and always will), a few years ago, I was blessed to meet a friend who has turned into another hero of mine. Let me preface this by sharing that I’m utterly embarrassed to admit that in junior high and high school, I deliberately avoided students with intellectual disabilities. This was for obvious reasons---I felt the need to prove my intelligence and wanted to desperately fit in. Looking back, I can give myself grace because I understand why I did it, but how ironic is it that 20+ years later, I tell you that one of my heroes is someone who has an intellectual disability? How experience and education can change one’s perspective!

I first met Cindy Bentley about ten or eleven years ago with I was appointed to the Independent Living Council of Wisconsin. Our paths have crossed hundreds of times since then as we work on many of the same disability advocacy things together. Somewhere along the lines, we became friends. It’s not my place to share all of her story, but this amazing woman is the definition of resilience and self-determination. She had a very rough beginning and spent many years in a state institution.

Recently, I was honored to have been able to attend an event celebrating the 40^th anniversary of Cindy not only living but THRIVING in the community. She has done far more than most people will do in a lifetime. She is the executive director of a statewide disability organization and has done more than she even realizes for the disability community.

What I admire most about Cindy is that she’s not afraid to speak up when she doesn’t understand something. It doesn’t matter what the event is or who is there, she will speak up if she doesn’t understand what’s being talked about. She will also go to bat for people who are being mistreated or aren’t getting the support they need. She’s not afraid to make waves to create change.

Admittedly, while I was at her celebration, I had a moment where I sat there looking around the packed gymnasium of people (I probably knew 75%) and just thought how amazing it was that all these people came together to rally around this one amazing individual to help her succeed in the community. The saying, “it takes a village to raise a child” is applicable to adults as well. As I’ve said in past entries, I know that I have a village of people who support me. It was incredible to see Cindy’s village come together to support her.

As we were driving back from the event, I said to my mom, “20 years ago, I wouldn’t have been caught dead at something like that, but that woman has taught me more than any college class ever did. I love her.” It’s really cool to see how perspectives can shift over time. It was really a special event.

I full-heartedly say that Cindy is a hero in my book. As someone with a significant physical disability, I look to Cindy to be reminded of perseverance and inspiration for whatever challenges life throws my way. I’m reminded that almost anything is possible if you put your mind to it. Thank you, Cindy, for being one of my heroes. Please always remember how loved you are!

***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.

Wearing white after Labor Day. Listening to Christmas music in May. Opening the car windows in the dead of winter. Marrying a person of a different race or different economical status. Dying your hair bright pink. Men having long hair. Women shaving their heads. Older people wearing exotic clothes. What do these things have in common? They are all things considered to be “out of the norm.” As a society, we have developed the idea of how things should be. I’m not going to dive into how the “norm” was created because frankly I don’t know, but when people don’t follow the norm, we, as human beings, judge. We judge because it’s different than what we’re accustomed to. People break the norm in many different ways. Sometimes, it’s out of spite, but oftentimes, it’s due to circumstance or the desire to be different.   Whether it’s race, gender, sexual orientation, disability, or another uncontrollable factor or factors, people who are in one or more minorities often face even more judgment when going against the so-called norm. Although, it has gotten a lot more acceptable for people to break the norm in today’s day in age, there’s still quite a stigma.

“YOLO!” (you only live once). That’s what I texted in my family’s group chat one recent Saturday night. Along with the text, I sent pictures of my new haircut. Anyone who knows me knows that I absolutely love experimenting with my hair. Over the years, I’ve pretty much had everything hair style you can imagine. Long, short, bright blonde, yellow, red, permed, you name it…the reason I love experimenting with my hair so much is because it’s one of the few things on my body that I have almost completely control over. The key word in the last sentence is almost. Since I’m not able to physically style it, I have to rely on others to do it. This can be very frustrating because it’s rare that people do it exactly how it I want it. Generally speaking, short hair tends to be easier, but it also grows out faster. In society, the norm is that females generally have medium to long length hair until they are senior citizens. Of course, many people go against the norm with a variety of hairstyles. My mom and dad pretty are traditional when it comes to hair. They aren’t a fan of anything bold or different. They love long hair on ladies. Over the years, when I’ve done drastic haircuts, they’ve playful teased me like most families do. They aren’t afraid to let me know they don’t like it and that’s fine. While I respect their opinion, it’s ultimately my decision.

Call it a midlife crisis, call it being bold, call it functional, call it whatever you want…this time, I wanted to go very short for my haircut. Whenever I schedule a haircut, one of my favorite things to do is to look for hairstyles online. Again, it goes back to that control piece—it’s something that I can control. I’ve been looking at a certain picture of a hairstyle for awhile and decided this would be the time that I go for it. I almost completely shaved my head and I can’t begin to tell you how much I love it. It was a liberating experience. It’s super easy to take care of and I honestly love the way it looks and feels. As I expected, my parents aren’t fans, but that’s ok. I absolutely love it and that’s what matters!

Being a woman with a physical disability who has her head shaved will bring on its own set of stigmas and that’s okay. I will be mistaken for a male, but I was with my last couple of hairstyles; I’m okay with that. Other wrong assumptions will be made because it’s against the norm and that’s totally understandable. As I explained in a past entry, assumptions are unavoidable-they’re a part of life.

Hairstyles aren’t the only thing that I tend to go against the norm on. I wrote a whole entry about this awhile back, but this issue seems to be becoming more and more front and center as the world transforms its norms. In recent years, it’s become the norm to refer to people with disabilities as “disabled.” While I understand that people with disabilities want to be seen as a community and take pride in having a disability, I just can’t bring myself to use the term. It’s probably really boastful for me to say, but I want to be seen as a person first. I know I’m now in a real slim minority on this, but I’m okay with that. I’ll probably always be against the norm on it, but that’s fine with me.

Having a significant physical disability puts me against so many norms as it is. In most cases, I don’t mind going against the norms. Yes, I know that may sound contradictory to things I’ve said, but I guess I don’t mind being different on my terms. Choosing to be different is different than being part of a minority due to uncontrollable factors of life. I didn’t choose to have a disability, but I can choose my hairstyle. See the difference? I’m choosing to be different by cutting my hair a certain way. That’s my choice.

Society has really transformed its norms over the last 30 years and that’s a great thing. The world has become more inclusive for everyone. Norms are always transforming, and, yet, they’re meant to be broken. It’d be a very boring world if everyone abided by the norms of society.

Will I shave my head again? Much to my parents’ dismay, I probably will. Going against the norm often singles people out. Often, when you go against the norm, it makes you stand out which can be good and bad. When enough people go against the norm on something, overtime, it often creates a new norm.  I want to challenge you to go against the norm on something you believe in or want to do. Be bold. Take a chance. Remember, YOLO!

***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.

Stop, drop, and roll. Go to the lowest level of a building. Avoid unsafe situations. As children, we are taught what to do in emergency situations. We know when a situation becomes dangerous, and, most of the time, adults know what to do when circumstances become dire. Whether people need to evacuate the situation immediately, call 911 to get help, take shelter in a safe location, or do something else to immediately reduce the risk of danger, generally speaking, most adults know what to do in emergency situations. Most adults also are physically able to make efforts to get out of harms way and do their best to protect themselves and others in their vicinity. Of course, no emergency situation is the same and there are thousands of factors that could play into every situation. For the most part, though, adults are able to do whatever they can to resolve the issue or at least minimize risk of danger for themselves and others. Regardless of what it is, being in an emergency situation is scary for everyone. For people with disabilities or health impairments, there is often another layer of fear is added. Many times, unforeseen physical barriers are presented in crisis situations, and people with mobility limitations are faced with additional challenges.

On a Monday night late in January, just after I had finished dinner, pounding on my front door scares my worker and I. I have a video doorbell, so it was odd that whoever it was chose not to ring that. Thinking it was weird because I wasn’t expecting anyone, I quickly open my doorbell app to see who it is. We see it’s a police officer. I follow my worker to answer the door. The officer explained that there was a domestic violence situation two doors down and we needed to evacuate. After seeing me, he quickly realized that it would be really hard for me to evacuate and he said he’d be right back. The reason it’d be nearly impossible for me to evacuate was because the sidewalk was snow covered. I live on the end of a building, and if I turned one way on the sidewalk, I would have been right in the middle of the incident; if I turned the other way, I would have gotten stuck because that part of the sidewalk wasn’t plowed. The officer left for 30 seconds; in the meantime, my worker and I frantically call my mom and tell her that we were told to evacuate. He came back while we were on the phone with her. My mom explained that they could come up with an accessible van, but they’re 45 minutes away. The officer said no they don’t want anyone to come in the area and that they just wanted us to move as far away as possible from the front door. He said he’d let us know when it was all clear. A few minutes after he left, we heard a cop with a megaphone say something like, “come out with your hands behind your head. I repeat, come out with your hands behind your head.” Admittedly, that really scared me. During this time, my mom was texting with me trying to calm me down and my worker was trying to calm me down as well. In the midst of this, I was getting texts from friends asking if I was ok because they said posts on the Oshkosh police scanner page on Facebook about an incident on my block. Until that point, we still had no idea what was going on. Multiple friends said it was a stabbing. I kept texting my mom. I didn’t respond to anyone else at that point. The officer eventually came back and let us know everything was fine. The whole ordeal lasted less than an hour. I never found out what actually happened nor did I want to, but, apparently, someone faked a stabbing. For a few weeks after that incident, I was pretty freaked out. I didn’t sleep very well and my anxiety was through the roof. I was, yet again, so glad I already had a counselor at that time. The reason that I can talk about this now is because the neighbors recently moved out which has been a huge stress relief. There were other incidents with the people, so, with them gone, I’m in a much safer place.

Looking back on that incident, I was very fortunate about a few things. The first and most important one being that it happened when I had someone with me. What would have happened if it had happened during the day when I was alone? What would the officer had done? Years ago, I thought was a list with the emergency services to make them aware of my circumstances. I’m not sure what happened to that program, but they didn’t have me listed. After the recent incident, my mom called the police department just to see if there was anything we can do to be precautionary. My address is now “flagged” in their system which means if there are ever any calls to my specific address, emergency personnel would have a heads up about my circumstances (I have cerebral palsy, I use a wheelchair, I use an app on my phone to communicate, etc…). We also found out that I can text 911 if I would ever need to. Gosh forbid, I would ever need to get emergency help, I now know that I can text 911. Second, I was really fortunate that it didn’t happen in the middle of the night. I don’t know what I would have done if an officer pounded on my door at 2a.m. Would I open the door by pressing the button on my bed table? Probably not because I’d be in bed, and the cop wouldn’t know what to do or how to communicate with me. I’d probably text and call my parents and then they’d call the police department and explain my circumstances. It’d be a mess! I now realize that the incident could have been much worse. I’m thankful that I was very fortunate with the timing and that nothing ended up happening, but, admittedly, it shook me pretty good.

I’ve only had a few encounters with paramedics in my lifetime. One was when I was just a few hours old and was transported to a different hospital. I obviously don’t remember that one. Another one about ten years ago when my parents and I were in Florida. It was the first time I had the severe stomach pains. We went to a stand-alone emergency room on the beach. I ended up needing to be admitted, so an ambulance had to take me to an actual hospital. My mom rode with me, so she communicated my needs to the paramedics. The other time I dealt with paramedics and firefighters was my second year at UW-Whitewater. I was in Economics class on the third floor of the business building when the power went out. It was quickly realized that it was campus-wide, so classes were canceled for the rest of the day. There was only one problem—the elevator obviously wasn’t going to work, so how was I going to get out of the building? All of my classmates left, but my professor stayed with me. I don’t remember exactly how it came down, but he must have contacted the Center for Students with Disabilities (CSD) to let them know we needed assistance. I don’t believe that I had a cell phone yet, but one of my good friends who worked with me knew where I was. She went to my dorm room, grabbed my manual wheelchair, and brought it to the business building. If I remember correctly, it took about two hours (because other students were stranded as well), but eventually a crew of seven or eight paramedics and firefighters showed up along with someone from CSD. They had a rescue chair to put me on to carry me down the stairs. At this point, I was laughing hysterically because it was made into such a big commotion. Everyone thought I was freaking out because I was scared, but my friend had to explain to them that I was fine; I was just laughing really hard. They carried me down and put me in my manual chair. I spent the day in my friend’s room until the power came back on. It’s one of my favorite memories from college, and I still occasionally tell it when I do presentations. I laugh every time.

Living with significant physical limitations can sometimes lead to some pretty interesting situations. While most of the time, I feel safe and confident in my surroundings, there are times when I’m scared because I don’t have the physical ability to protect myself. I admit, as I get older, I find myself becoming more of a scaredy cat in different situations. Maybe it’s age; maybe it’s anxiety. I just have to try to be as cautious as I can be and be prepared for life’s twists and turns!

***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.

Stepping off a sidewalk curb. Running down the stairs in your house. Cutting fruit for dinner. Crossing the street to get the mail. What do these things have in common? They all have a physical factor of caution. Obviously, most adults don’t think twice about doing any of these things. Simple tasks become second nature as children grow into adults. When was the last time you actually thought about being cautious when you were running down a staircase to do something? Unless there are obvious sign of danger, most people don’t even think about the hundreds of risks they take in a day. Albeit, very small in most cases, every single thing we do has some level of caution associated with it. Some people are known to be more cautious than others. It’s no different when it comes to people with disabilities—some of us are way more cautious than others.

In a journal entry about a year ago, entitled, Dignity of Risk, I talked about the big risks I’ve taken in life. I explained that the big risks I’ve taken have taken have led to opportunities I’ve never could have imagined and have really shaped my life. While that’s 100% true, there are several things that I have to do very cautiously every day.   Most things that I have to be careful are that most people wouldn’t have to even think about.  Things as simple as turning on my wheelchair after I’ve been sitting at my computer desk working all are things that I have to really careful while doing because if I hit my phone off the mount, I couldn’t contact anyone until my next worker came. This has happened a couple of times before, and it’s a scary feeling. As minute as this sounds, another example would be when I feed myself lunch, I have to be very careful not only that I don’t drop the food, but I also have to be very cautious that I don’t choke myself. Until recently, this wasn’t a huge concern; however, within the last month or two, I’ve noticed that eating has become a bit more difficult. So far, fortunately, I’ve been able to clear my throat on my own by coughing, but, when I feed myself lunch, nobody would be here to help me if I were to actually choke. I have to be very cautious when I eat by myself.

Another thing that I have to be very careful about is moving around my apartment by myself. Yes, my apartment is accessible, but if a tire on my wheelchair would get caught on a doorway or something, I would literally be stuck until someone came to help me. Yes, I would have my phone so I could text people for help; however, depending on the situation, I could be stuck in the same spot for hours. Being stuck isn’t the only thing I have to worry about. A power wheelchair is like an automobile—things wear out and the you experience mechanical problems from time to time. This is what I’ve been experiencing recently. As luck would have it, the day before I was supposed to come back to my apartment after the holidays, an error message started flashing on my joystick. We called the wheelchair place, and they had us try a couple different things; none of which got rid of the error. They said as long as it was working OK, I should be fine to go back. It continued to flash, so a couple weeks later, I had a doctor’s appointment in Fondy and we arranged for my wheelchair to be dropped off at the shop so they could determine what was wrong with it. They thought it was the joystick, so a new one was ordered. Well, it finally came in and my wheelchair guy came to my apartment to replace it. Unfortunately, the error message popped up on the new joystick, so it wasn’t what they thought. Knock-on-wood, the chair is still working fine, but I find myself being even more cautious when I’m alone. I’m so afraid of getting stranded.

Other unique things that I find myself being overly cautious about are things that seem miniscule to most people. A simple task like restarting my computer can be risky to do when I’m alone. I have so many pieces of adaptive equipment that plug into my computer that when I have to restart, it’s always a gamble whether or not everything is going to work. If a piece of equipment isn’t working, I have to wait until someone is here to unplug it and plug it back in.

There are several things like that where if I attempt to do it myself, I risk the chance of doing more harm than good. In other words, if I attempt to do something myself, I risk messing it up. I’m constantly trying to balance being cautiously independent and risking messing whatever it is up to the point where I can’t proceed without assistance from another person. At times, it can be mentally wearing trying to be as independent as possible; yet, having to use an abundance of caution at the same time.

While most people likely don’t realize it, every single person uses some level of caution on a daily basis. Caution is a human instinct. People have a wide variety of caution. Some people are overly cautious; while others are riskier. Being a cautious person comes with pros and cons. On one hand, you may miss out on opportunities because you like to play it safe, but, on the other hand, playing it safe gives you assurance. Each of us has to find a balance of caution that she/he feels comfortable with. There is no such thing as a right level of caution. It’s an individual choice. I challenge you to test your level every once in a while—by doing so, it could lead to something you’d never dream of!

***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.

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.

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.