By Stacy Ellingen, 2019-03-02
Have you ever been somewhere when you suddenly pause for a moment and think to yourself, “How did I get here?” Whether it’s laying in a hospital bed, walking on stage for a graduation, lining up for a play on the field of a packed football stadium, sitting in a courtroom awaiting the jury’s verdict, or in another situation, most people have experienced a moment where they have stepped back and thought about how they ended up in that situation. Many times, those moments can feel like an epiphany to people. Obviously, depending on the circumstances, it can be a positive or negative revolution.
I had one of those moments a few weeks ago while attending Independent Living Days in Madison. As I mentioned in a previous entry, last year I was appointed to the Independent Living Council of Wisconsin. The Council works together with the eight Independent Living Centers in Wisconsin to provide services and advocacy for people of all ages with all types of disabilities. The Council meets quarterly rotating visiting the Centers. Due to transportation and care issues, I attended a couple last year via teleconference. Fortunately, thanks to my parents, I’ve been able to attend the last three in-person. The February meeting is usually held at the center in Madison because Independent Living Days are right after it. After discussing it with my parents, my mom agreed to come along as my caretaker. Being my first time attending, I wasn’t really sure exactly what Independent Living Days were. After some emailing, I learned that it’s a two-day event- the first day is like a conference about Independent Living and the second day is meeting with legislators at the Capitol. There was a teleconference beforehand about what messages and asks to bring to the legislators. After the teleconference, I programmed all sorts of different things to say into my communication app.
Being a council member, I was in Madison for four nights. Monday was our council meeting, Tuesday was an off day (the directors of the Centers had their meeting), and Wednesday and Thursday were Independent Living Days. My sister and brother-in-law live in the Madison area, so I’ve been down there a few times, but this time my mom and I really got to explore the area which was fun. Tuesday, we walked around State Street and the Terrace which was neat. We also were able to meet relatives for dinner a couple of the nights so that was nice.
Wednesday and Thursday were amazing. The hotel where the conference was at Wednesday was full, so, since parking is such a mess is that area, mom and I walked from our hotel which was about a mile away. Of course, it’s Wisconsin, so it was snowing that day which made the walk interesting. They started the conference off by giving a brief history of Independent Living in Wisconsin. Being relatively new to this, I found it very interesting. The break-out sessions were more geared toward Independent Living Center staff, but it was great learning more about the services the Centers provide. For me, it was absolutely awesome getting to network with so many people—especially people from my area. In the evening, they had a dinner, an award ceremony, and karaoke, so it was fun to be able to socialize.
Thursday morning, we met at the Capitol bright and early. I had only been in the Capitol one other time—the day before my sister’s wedding and we were only there for a few minutes. I had never actually seen offices or rooms. It was neat to see. Each center setup visits with legislators from their area of the state. People went in groups to each visit. There was at least one employee from the Independent Living Center in every group and that person took the lead in back the conversation. There were four main topics we were supposed to discuss: Healthcare, Mental Health, Transportation, and Independent Living funding. Each category had several asks (mainly for more funding), but, as I learned, it was more important to explain to the legislators about what people with disabilities are struggling with and how more funding or supporting a certain bill or issue would help. I was able to meet with five legislators (or a person from their staff) that morning. During the visits, I often chimed in on the topic of healthcare sharing personal stories about the direct careworker shortage. I feel like personal stories make most of an impact on people. Unfortunately, the visits were only about 15 minutes each, so there wasn’t much time for each topic. Each legislator was given a folder with information about the Independent Living Center and the topics we discussed.
After we were finished with our visits, we all met back in a huge courtroom to have lunch. As I was conversing with some of my new friends, I had *that* moment. How did I end up in the Capitol advocating for issues I wholeheartedly believe in? How did I become such an advocate? Twenty-five years ago, who would have ever thought that I’d be using my cell phone to not only converse with friends, but to speak with legislators about crucial issues people with disabilities face? I couldn’t help but reflect on where life’s path has taken me. Sure, there have been many curves, but, often, those curves lead me on new paths.
I can only hope we made an impact during our legislative visits that day. For me, saying it was an eye-opening experience would be a huge understatement. Being able to advocate on that level was truly amazing. In recent years, I’ve become more involved in disability advocacy. I only hope I can continue to do so—I believe it’s my purpose in life!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
By Stacy Ellingen, 2019-02-02
Windchill warnings, polar vortex, below zero temperatures- people in Wisconsin have gotten very familiar with these terms recently. Everybody knows winters in Wisconsin can be brutal. Plowing out from a foot of snow is one thing; dealing with dangerously low temperatures and windchills is another. Dangerously cold temperatures affect everyone. From starting a vehicle early so it can warm up, to taking the dog out, to being called off work or having to find child care because school is canceled… bitter cold temperatures impact people in multiple ways. For people with disabilities, extreme temperatures (cold or hot) often create some unique challenges.
While I’m a person who likes snow around the holiday season, I’m not a fan of cold weather. Having a physical disability, cold temperatures cause challenges that an average person probably doesn’t even think about. Bundling up often takes some work. Due to my muscle spasticity because of cerebral palsy getting a winter jacket takes quite a bit of pulling and yanking from the person helping me. As I’ve explained in previous entries, often when I want my body to move one way, it does the opposite; for example, when I want my arm to point straight out to get a coat on, it retracts. It’s just how my body works. Usually I’m also wearing a sweatshirt also, so that adds another issue; when I stick my arm in the coat, the sleeve of my sweatshirt often hikes way up my arm since I’m not able to hold onto it. Somebody has put their hand up the arm once the coat is on to pull the sweatshirt sleeve down. Coats are definitely a pain for me!
Gloves and hats cause similar problems. I rarely ever wear gloves. Getting gloves on me is like pulling teeth on a giraffe. Because of my muscle contractors it’s nearly impossible to get my fingers in the right spots. Even when we do get gloves on me, it’s not ideal because I sometimes can’t drive my wheelchair or use my phone (which serves as my communication device). Hats and headbands often slide down due to my constant movements.
I think I may have written about this in an entry a few years ago, but while I was in college at UW-Whitewater, I never wore a jacket or gloves and hat to class. People thought I was absolutely crazy, but I didn’t have anyone to help me dress and undress each time I went to and from class. I’d get way too hot (especially in the dorms) if I wore my coat all day. Looking back, it probably wasn’t the smartest thing to do, but I survived!
For people who have intellectual disabilities, the frigid cold weather is dangerous as well. People may not understand why it’s so important to bundle up. They may wander outside without realizing that it’s dangerously cold. People may not understand why they aren’t able to do their normal routine.
Extreme temperatures impact other things for people with disabilities. Below zero temperatures and windchills could cause health care professionals to be unable to get to work. This can cause delays in service and care for people with disabilities. Specialized and public transportation services many be delayed or stopped resulting in people missing work or appointments. Day programs may be closed forcing family caregivers to have to miss work. The list goes on and on.
Outside temperature can affect Some disabilities and health conditions. For me, I’ve noticed that extreme cold causes havoc with my muscle tone. I usually handle and enjoy warmer temperatures; however, when it gets really really hot, I’ve noticed my tolerance has decreased as I’ve gotten older. I think it has to do with sitting in a black wheelchair seat all the time. It gets pretty toasty!
Personally, I’d take a 95 degree day over a -50 degree day anyday. As we all know, though, Wisconsin has four seasons, and with that comes a big temperature variance. Some people like the cold weather; some people enjoy the really warm weather. I guess we get a bit of everything in this state. I say, BRING ON SPRING!!!
By Stacy Ellingen, 2019-01-27
Ever feel like you’re on an uphill battle with no clear end in sight? I think everybody has at some point in their life. Whether it’s with health issues, relationship issues, financial issues, work issues, or a combination of things, most people face some kind of adversity during life. I like Robin Roberts’ quote: “Everybody has something.” Although it may seem like it, nobody has a perfect life. Every single person has some adversity. Obviously, there are many different perceptions when it comes to the challenges people face. What may be a major crisis to one person, might seem like a small bump in the road to somebody else. It’s often assumed that people with disabilities face more challenges than the average person. Regardless of what the issue may be, facing adversity is part of life.
Why am I writing another entry about dealing with adversity? It seems like it’s often the general topic of most of my articles, right? Yes, I’m well aware of that; it’s my hope that I’m helping spread awareness by sharing my perspective and experiences. I feel that facing adversity and sharing how one perseveres through it is a key part of advocacy.
The past two months, I’ve faced my fair share of challenges. In past entries, I’ve discussed how my parents and I were looking into different care options. Long story short, in the beginning of November, we thought we had found a home care agency that billed Medical Assistance that could meet my needs. My mom and I met with the nurse in mid-November and did the initial assessment. Many calls and emails with the scheduler were done, and it was eventually decided that their workers would shadow my Self-Directed Personal Care (SDPC) workers the first two weeks of December and then the agency would take over the first week of January. I had a planned surgery scheduled in mid-December and had planned to be at my parents a few weeks recovering over the holiday season. I thought things were lining up just perfectly. I’d end with my SDPC workers (besides my parents) right before surgery, have the surgery, recover and enjoy the holidays at my parents, and start with the agency in the new year.
In late November, I had to let my SDPC workers know that people from an agency would be coming in to shadow and that the agency would be taking over in January. It was really hard making that announcement. I felt absolutely horrible having to let them go, but I was hopeful that this would be the answer to my situation. December came and the agency started shadowing. They had four or five people come in during various shifts. Admittedly, it was a little awkward having the agency workers observe the people who were losing their jobs, but the workers understood and made the best of the situation. It’s never easy having new people take care of you, but training was going ok until the second week in someone from the agency said, “we can’t give meds, so I don’t know what they’re going to do.” Wait! What? I take multiple medications each morning. Obviously, I can tell people which medication I need, but I physically am not able to put pills in my mouth. I had my mom call the office right away and she left a message asking about it. A few hours I received an email saying that was correct—their workers cannot give medication. They wondered if I could have somebody come in and do meds each morning before the morning shift. That totally defeats the purpose of having an agency! With other agencies I’ve had, they’ve had a nurse set up the meds in pill containers for two-week time periods, and then the workers could give me pills out of the container rather than from the med bottles; however, this agency didn’t even allow that. There was some major miscommunication along the way because when mom and I initially met with the nurse, she physically had the pill bottles in her hand and wrote down each medication, but never said their workers couldn’t give meds (and we discussed how I have to have somebody feed me). Furthermore, what’s crazy is that med administration is listed as a class they offer for workers on their website! After I got the email, I called my parents freaking out—what were we going to do? I had given the four or five SDPC notice and hadn’t hired anyone new in months anticipating switching to an agency. Luckily, my great parents drove up and we devised a plan. I had no choice, but to stay on SDPC and keep hiring my own workers. Thankfully, about three of my workers were still interested in working with me. We’re back to hiring people and scrambling to fill shifts, but it’s our only option at this point. This not only affects me, it also affects my parents. Especially with the cold weather here, being newly retired, they desperately want to travel; however, with the uncertainty of my care situation, they can’t leave the state. It’s very frustrating for both them and I.
In addition to the care debacle, I’ve had some unforeseen health issues arise. The planned surgery in December to replace my Baclofen pump (which drips a muscle relaxant into my spinal fluid) went fine, but a few weeks later, my muscle spasticity went haywire. After trips to the ER and multiple tests, it was thought I needed another surgery to correct the pump. They went in and checked everything out; it turns out everything looked fine. They aren’t sure what caused the drastic increase in spasticity, but now I have steps I can take to help decrease it when it happens. While I’m glad we have solutions to help with the issue, it’s just one more side effect of cerebral palsy to deal with.
My wish for a fresh start in 2019 didn’t happen like I had hoped. In fact, its been just the opposite. Life throws people all different kinds of curves. People deal with challenges in many different ways; some good, some bad. People’s true colors show when they’re faced with adversity. Although, very hard to do at times, when we’re faced with unforeseen challenges, we must put one foot in front of the other and persevere.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
By Stacy Ellingen, 2018-12-02
Whether it’s letting somebody go first at a four-way stop, buying the next person’s coffee in a drive-thru line, or donating your time to ring bells for the Salvation Army, many people enjoy “paying it forward.” Giving time, talents, or money to others makes people feel good about themselves. Especially during the holiday season, there seem to be a lot of feel good stories about people helping others. Of course, unfortunately, in today’s world, people have to be careful of what and who they are paying it forward to (making sure it’s a legitimate cause). When paying it forward, people usually like to remain anonymous and don’t want any recognition for their actions.
Over the years, I’ve noticed that people with disabilities are often recipients of the paying it forward notion. While the action is very appreciated, the recipient usually can’t help but wonder why he/she was chosen? Was it because I look different? Was it because I needed help eating? Did I accidentally cause a disturbance when I had a muscle spasm or hit a table with my wheelchair? Did I look like I needed help? Did they feel bad for my family and I? Of course, I can only speak from having a physical disability, but these are the questions I ask myself when somebody pays it forward to me.
A few months ago, while on the way back from Florida, my parents and I stopped at a steak house in Kentucky for dinner. We had a few cocktails and then just had salad bar for dinner. We were tired from driving and wanted to get bed early. When my dad asked for the bill, the waitress told us that it had been taken care of. All three of us were like, “what?” We tried to get the waitress to tell us who paid for it, but, of course, she was sworn to secrecy. We told her to thank whoever paid for it and left in complete shock. We didn’t know what to do. My mom kept saying, “there are good people in the world.” While I agree that’s true, I personally felt very awkward. In those circumstances, you almost have to assume that the people have pity on your situation.
Another time, years ago, my family and I were out for fish with my grandparents at a restaurant in my hometown, and somebody anonymously picked up the whole bill. Again, while we were very appreciative, everybody felt very awkward—especially my grandparents. While we’ll never know the reason behind the kind act, when you are or you’re with someone who visibly has some challenges, it’s only natural to wonder if it was done out of pity.
It’s well known in the disability community that people normally don’t want to be pitied just because they have different abilities. Although, thanks to awareness and advocacy efforts over the years, it has greatly improved, but the truth is that the general population still pities those of us with disabilities. Often, people don’t know what to do or how to help when they see someone with different abilities out in public, so they try to help by paying for something. Speaking for myself, while I’m incredibly appreciative when this happens, I’d much rather educate the person by sharing a little bit of my story with him/her.
Unfortunately, I don’t know how to fix this stigma other than to keep advocating and educating. We, as people with disabilities, should try to pay it forward as well. Remember, it doesn’t have to be monetarily. There are many different ways to pay it forward. Whether it’s volunteering at an animal shelter, shoveling your neighbor’s driveway, bringing a meal to a homeless shelter, or simply smiling at someone who’s having a bad day, everybody can pay it forward in some way or another.
How do you pay it forward? I challenge you to pay it forward at least once during this holiday season.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
By Stacy Ellingen, 2018-11-01
When’s my next shift? Will the person show up? What do I do if they don’t? Am in the right program? What will my future look like? While most people my age worry about things like wedding plans, their kids’ activities, and buying or remodeling a house, I’m faced with questions that nobody should have to worry about. As I discussed in my August entry, my family and I have started looking into different care and living options for me. Until we recently started researching the options, I had no idea of how absolutely messed up the long-term care system really is.
As I explained in previous entries, when I started college at UW-Whitewater, I was on a wavier program which allowed Medical Assistance to pay for my cares with an agency. When I graduated and moved back to Fondy, my parents and I met with the local Aging and Disability Resource Center (ADRC). At the time, we were presented with two long-term care program options—Family Care and IRIS. Back then, Family Care really didn’t have self-direction options, so IRIS was the obviously right choice for me. At the time, the home care agencies I was trying billed Medical Assistance, so that wasn’t an issue. When we realized that the care agencies weren’t working, I got on the waiting list for Self-Directed Personal Care through IRIS. It worked out that right around the time I got on SDPC I found out that I got the apartment in Oshkosh. I was very lucky that the care agency that was connected to the apartments worked with us and billed through SDPC. That worked incredibly well for over five years until rules changed in IRIS no longer allowing third-party vendors for SDPC. Long story short, I went to an agency that billed Medical Assistance for eight months. For various reasons, that didn’t work out, so I went back to SDPC and have been hiring and managing my own staff for over two years. As I’ve explained, it’s a lot of work and stress. For the time being, my parents and I are making it work because basically we have to, but we realize that this isn’t going to work long term.
When my sister settled down in the Madison about three years ago, I thought that I’d eventually move down there—not only to be closer to her, but since it’s a bigger city, I had thought that services would be better and there’d be better opportunities. Just over a year ago, I got on waiting lists for two income-based accessible apartments in Madison. We knew that the list was years long, but at least I was on the list. A few months ago, when cares really started becoming a challenge again, my mom and I started researching our options. What we’ve learned is that the options are very limited and the “system” is unbelievably broken.
In early October, my mom and I went to Madison for a day and met with the ADRC and the Independent Living Center. My sister happened to have the day off, so she joined us. I went into these meetings with a very open-mind wanting to learn about all the options available. We learned that everyone who receives long-term care services in Wisconsin has to in one of three programs: IRIS, Family Care, or Partnership. IRIS is the least restrictive and Partnership is the most; Family Care falls in between. Initially, our first thought was to switch to Family Care because it still has self-direction options, but yet it sounded like they’d help me manage my care. Perfect, right? We then began to ask questions about the care agencies and housing. Due to the care shortage everywhere, agencies are having a hard time filling shifts and many aren’t taking on new clients.
There are several different types of living options for people with disabilities, but, unfortunately, none of them are really appropriate for me. There are basically Adult Family Homes, Assisted Living Facilities, and Residential Care Apartment Complexes (RCACs). There are variations of these, but they are the main categories. Adult Family Homes are basically group homes. There are very few for those with physical disabilities, and honestly, I don’t want that. Assisted Living Facilities usually have age limits (usually 55). RCACs are probably the closest thing I’d consider, but I don’t fit the criteria (usually require less than 28 hours of care per week and need to be able to transfer independently) for those either. We asked about how income-based housing works. The Dane County Section 8 waiting list is now closed, but they won’t even tell people where they are on the list. You aren’t allowed to tour an apartment until you’re at the top of the list and your application has been accepted, so you’re expected to apply for these apartments without even seeing them! From the little information we were able to find online about them, we learned that the apartments are usually one bedroom and are quite a bit smaller than what I have.
After learning a lot of information, my mom and I discussed our options on the way home. I realized that I’d be no better off in Madison. My apartment here is really pretty nice, and we can work on improving my situation here rather than starting all over down there. I had decided I wanted to look into Family Care in Winnebago County. It wasn’t an easy decision as I felt like I was giving up my independence I had in IRIS, but, nevertheless, I was ready to at least consider it because I understand something needs to change. My mom called the local ADRC the next morning to try to setup an appointment to learn more about Family Care. The case worker asked why I wanted to switch. My mom explained that we were just having too much trouble with cares and wanted to learn about Family Care. The worker wasn’t very nice or helpful, and she told us that we’d be no better off because agencies are having the same problem.
My mom and I have done some more research on our own and found out that there are two Managed Care Organizations (MCOs) that work with Family Care in my county. Neither of them will meet with us unless I enroll. The list of their providers is on their websites; however, you don’t know what your options truly are until you enroll and apparently have a team meeting. It’s incredibly frustrating because there are a lot of home care agencies out there, but because they get a better deal with contracts from the MCOs, very few of them accept Medical Assistance. The few agencies in my area that do seem to be either be full or only provide services during daytime hours which makes no sense to me. How can a home care agency that provides personal cares for people only provide care until 7p.m.? I’d be stuck in bed for 12+ hours!
Where does all of this leave me? Good question. Nobody really has a solution at the moment. We continue to do research and look for options. Personally, it’s very nerve-racking and depressing knowing there isn’t a good solution. What’s one supposed to do? Many people say raise wages for caretakers; while I agree that’d definitely help, I don’t think it’d fix everything. I’ve spent many sleepless nights pondering; I don’t know what the answer is. It’s not likely to happen anytime soon, but I think a complete overhaul of the “system” needs to happen. I’m not even sure what that would entail, but things need to change.
So, while I’d give anything to have the worries most people my age have, I have to remind myself that I have a special purpose in life—it’s to advocate and pave new paths for people with different abilities. I don’t have the answers, but I know giving up is not an option in my family!
By Stacy Ellingen, 2018-10-01
Whether it’s Loaves and Fishes, Optimist Club, donating blood, or something else, most people enjoy giving to others. Volunteering or being active in the community often makes people feel good about themselves. For many people with disabilities, it often seems impossible to give back to the community. Barriers such as transportation, communication, or just simply physically being able to do the task at hand often prevent our ability to volunteer.
Growing up, my mom was always involved in something it seems. Whether it was teaching Sunday school, serving on church council, or being the President of the ARC, she was and continues to be involved in something. My sister followed her example by volunteering at the hospital in high school and now she volunteers with a spinal cord injury group in the Madison area. Due to my physical limitations, I had to find different ways that I could give back and be involved in the community.
Although I probably didn’t realize it, I started giving back when I was really young. Beginning in elementary school, almost every year I would make a presentation to my class about why I was the way I was. Obviously, for the first few years, it was pretty basic and didn’t go into much detail about what actually happened during my birth, but, as we got older, I went into more detail. My message always was that I’m just like all of you except my muscles don’t work like they’re supposed to. It helped my classmates understand and feel comfortable with my circumstances. In high school, I also presented to a couple of speech classes about the different communication methods I used.
In college, I occasionally was invited to speak to education classes about living with a disability. The students in these classes were going to be teachers and were interested in how teachers accommodated me. I still occasionally speak to classes at UW-Oshkosh. It’s a little nerve-racking because these students are really listening to what I’m saying and may someday use something I talked about in their own classroom. It’s also very rewarding to me because future teachers are learning from me!
I was fortunate to have an incredible opportunity for a few years while I was in college to be a volunteer columnist for my hometown newspaper. What started out as a failed job shadow tour (because, at the time, the newspaper layout room wasn’t accessible), turned into an incredible experience. Every other week, I wrote a column about living with a disability. I wrote about all different topics. It was very well received by the community and the exposure was great.
Like as everybody says, the Internet has opened up a whole new world. As I’ve explained in a previous entry, I’ve been a part of many online disability support groups for many years. First, it was egroups; as the web advanced, groups emerged on social media sites. These groups not only allow people to share valuable information with one another, it also allows people to share experiences and develop relationships with those with similar circumstances. I’ve been able to connect with many parents of younger children who have cerebral palsy. I’ve shared my experiences, answered questions, and offered advice on various topics. By doing that, I feel like I’m “giving back” in some small way. It’s really a great feeling.
Recently, I have been able to get involved with some disability advocacy councils. Last year, I was appointed to the Wisconsin Independent Living Council. The Council runs the eight Independent Living Centers across the state. While I’m still learning the ropes, being a member makes me feel like I’m contributing. I’ve applied to a couple more boards and councils, and I hope to get more involved in disability advocacy efforts soon.
While I may not be able to “give to the common good” in a traditional way, I find other ways to contribute to society. I truly believe every single person on Earth, regardless of his/her circumstances, has something to give. Sometimes, a person’s gifts and talents may not be blatantly obvious, but if we take time to dig deep enough, I believe you’ll find a special talent in everyone!
By Stacy Ellingen, 2018-09-10
“Life isn’t fair.” Most of us have heard that saying more than once in life. Whether it’s your favorite team losing a game or learning devastating news about a loved one, hearing someone say “life isn’t fair” in those situations often isn’t what we like to hear. As I’ve said in previous entries, comparing ourselves to one another is human nature. Most times, when we compare ourselves, we are invoking pity on oneself over our circumstances. It’s during these times that life truly doesn’t seem fair. For people with disabilities and health conditions, self pity is something we vastly try to avoid, but, sometimes, at least for myself, I can’t.
I admit, the last few months have been pretty rough. Many issues relating to having a disability have surfaced, and I’ve been faced with a dose of reality. My care situation continues to be an unbelievable struggle. I had four people quit in one week. Two of the people were brand-new hires and didn’t show up for training on multiple occasions. I try to give people a few chances, but, when it comes down to it, I need responsible people because I literally depend on them to live. Due to these people quitting, I’m left with a ton of open shifts. Thank goodness my parents are retired because they’ve been my savior. I’ve had to go to their house for a few days and they’ve also come up here (it’s about a half hour drive) multiple days per week to help me. I also often go without a lunch shift (which includes using the restroom). This situation isn’t at all what I want. I absolutely hate relying on my parents. I’m burdening them and their plans. They, of course say, it’s ok, but it’s not! People tell me that I can’t take it personally when people no show or quit, but it’s almost impossible not to under these circumstances.
Due to these care issues, discussions about my future have started. Quite frankly, it’s pretty depressing. I’m a very realistic person, but I guess I’m also a dreamer. While I know that we need to come up with a better plan or solution, in the back of my mind, I ponder what if I could meet that special person who I could spend the rest of my life with. Everything from around the clock care, to group homes, to assisted living have been brought up. I understand these are the realistic options for my situation, but, honestly, it breaks my heart that we have to even discuss these options for me. Boastfully, I take a lot of pride in the independence I do have. Even though, deep down I understand assisted living or a nursing home will probably be reality for me at some point down the road, I’m only 33 years old. I don’t want that for myself. Selfishly, I think I deserve better.
Though definitely most prevalent, cares aren’t the only issues I’ve had. Earlier this summer, I saw a gastrointestinal specialist to see if there was anything that could be done to prevent more stomach issues. I guess I was hoping for some magical solution; instead, I was basically told nothing could be done and to probably expect more problems. Unfortunately, due to cerebral palsy, it’s just the way my body is. Additionally, I had been dealing with another medical issue for over six months; I finally saw a specialist for it last month and learned, though it can improve with treatment, it’ll likely never completely go away because of my condition. Thankfully, it’s very minor and something I can easily live with, but it’s just one more thing to deal with.
Additionally, I’ve been dealing with some social issues due to my physical limitations as well. People make plans and try to include everybody, but don’t realize that the plans aren’t realistic for a person in with my circumstances. While I know people never mean to exclude me, it’s very frustrating when I’m not able to participate in things due to my physical limitations. Usually I’m pretty good at seeing happiness through other people’s eyes, but, in some situations, it’s almost impossible to do. There are just some things that I desperately wish I could do, and when people I love get to do them, sometimes, it’s just hard.
How do I deal with self-pity and disappointment? Unlike most people my age, I don’t have a significant other to vent to or to comfort me. This often poses a problem because often, besides a few close family members and friends, the only other outlet I have is social media. I often irrationally post some on Facebook out of frustration. Far too many times I’ve heard it from my mom because family members have called her asking what’s wrong with me. I’ve gotten better at refraining from posting, but, admittedly, I’m not perfect. Putting my feelings on Facebook allows me to talk with friends who have similar situations. Depending on what the situation is, I often just message people now instead of posting.
Do I want pity? Absolutely not! I certainly admit, though, there have been far too many times lately when I felt hopeless and sorry for myself. It really does no good, but it’s human nature to. It’s during those difficult times that I rely on my wonderful family and friends to help me through. I also think people with disabilities have a stubborn side to them, and, often, I think that’s what helps us persevere through the challenges life throws at us!
By Stacy Ellingen, 2018-07-31
A tv commercial demonstrating how to interact with those with disabilities has been running in my area. While the commercial is positive and has accurate advice, when I first saw it, I questioned why it’s even needed. After all, we’re in the twenty-first century. Shouldn’t people know to treat a person who happens to have a disability like any other person? Unfortunately, that’s not the case. Although, it has significantly improved over the years, the general population still isn’t comfortable with people with disabilities.
“She’s drooling.” That’s what a man walked up and said to my mom as he handed her a paper towel in a congregational meeting after church one recent Sunday morning. Very shocked and not wanting to make a scene, my mom quietly said, “thank you.” I, on the other hand, was ready to walk out of the room right then and there. Mom made me wait until we voted on the issue and then we left. Words can’t describe how utterly embarrassed I was. I don’t even think that the people sitting at our table realized what had happened (which is a good thing), but that’s not the point. I’ve been going to that church all of my life and know that man has seen me many times before. I realize that in his heart, he probably meant it well, but If these things are still going on in a church of all places, there is a lot more educating to do. Most of the time, people with physical disabilities are well aware of what their bodies do or don’t do, and to have an adult point it out, is a real slap in the face (kids are a different story because they don’t know better).
Articles about “disability etiquette” have surfaced on social media in recent years. One thing commonly discussed in those articles Is how not to automatically help a person with a disability without first asking. While it’s human nature to want to help somebody who appears to be struggling with a simple task, often people with disabilities and other conditions take pride in being able to do things independently. If someone jumps in and tries to help without asking, not only could it hinder the person’s independence, it could also unintentionally harm the person or his/her equipment. Another common thing often discussed in those articles is how people should always talk directly to the person even if he/she appears to unable to communicate or not cognitively aware. This happens all the time to me. Rather than asking me a question directly, they’ll phrase it in third-person and ask the person who I’m with. This drives me crazy! Granted, the people I’m with often answer questions for me just to save time, but questions should be always directed toward the person it’s about (if he/she is present) .
While those articles are great, I often wonder who reads them besides those who live and work in the disability community. Generally speaking, most family and friends of someone with a disability learn fairly quickly what’s considered offensive to people who have disabilities and health conditions. I’m betting that most of the people who read those articles certainty agree with the etiquette tips, but aren’t the ones who need the information.
I haven’t seen too many things about “not pointing out the obvious” for lack of a better words. In my opinion, a lot of it has to do with the way people were brought up. As I’m writing this, something else dawned on me. Fifty years ago, people with disabilities were rarely seen in public. That probably has a lot to do with why many older adults often aren’t sure what to do around people with different abilities. It certainly isn’t an excuse by any means, but it explains a little bit—some older adults were never around people with disabilities while growing up.
Dealing with other people’s reactions definitely takes an emotional toll. As I’ve said before, unless a situation presents itself, I usually don’t think of myself as having a disability. However, it doesn’t sit well when I’m reminded of my differences due to someone pointing out a flaw. Regardless of whether it was intentional or not, it still hurts. I’ve learned to laugh most of the comments off, but there are some that really sting. It’s when those happen that I need to be reminded that I’m a pretty unique person, and sometimes people are totally unaware that their comments are very degrading. All we can do is keep educating society in hope that one day each and every person—regardless of his/her unique differences—is treated just like everyone else. It’s apparent that we still have some work to do!
By Stacy Ellingen, 2018-06-27
Who is going to get me up in the morning? Do I have lunch covered? Who has the dinner shift? Is the bed shift covered tonight or will I have to sleep in my wheelchair? Did everyone submit hours? While these aren’t things people typically think about, questions such as these run through my head usually many times a day. When you rely on others for help with almost all of your basic needs, you’re practically forced to constantly think about these things.
Recently, thanks to “Facebook Memories,” I was reminded that it has been two years since I started hiring my own caretakers through Self-Directed Personal Care (with IRIS). What a learning experience it has been! Before I switched to SDPC, I had been with many different home care agencies over the years. As I explained in a previous entry, I started with home care in junior high or high school. Back then, it was just for like an hour after school just to help me off the bus, get me inside the house, help me to the restroom, and feed me a snack. It was when I moved to UW-Whitewater that I truly learned what home care was. Although, I didn’t realize it at the time, the care agency that I had down there was by far the best agency I’ve had. Sure, I had some issues with them, but they worked with me, and always made sure I was well cared for. Granted, I realize a lot of it probably had to do with the people I became friends with, but the administration worked with clients to endure they were happy with services. After college, while at my parents, I worked with two different care agencies which for various reasons didn’t work out. When I moved to Oshkosh, I started with an agency that was connected to the apartments I moved into. I was with them for over five years. Unfortunately, due to a rule change, I had to switch agencies. I was with another agency for eight months and I had a plethora of issues. Tardiness, no shows, and the caliber of workers were just some of the problems I had. It wasn’t safe for me to stay with the agency, so I switched to SDPC.
Hiring and scheduling my own staff is like a full-time job. I post ads online on places such as Facebook and indeed.com. Fortunately, my mom helps me with the initial process. We may be changing how we do things in the near future, but, for now, when I get a name of a person, I forward the information to my mom. She calls the person, tells them a little bit about me, and sort of does a phone interview. If the person is interested, I then email the person the packet. I tell them to print the paperwork off, fill it out, and to email me to setup a time to drop it off.
Unfortunately, it’s getting harder and harder to find people. Most job websites now change to post jobs. I’d maybe consider it if I thought It’d help get more applicants, but I honestly don’t think that’s the case. One of my biggest problems is that I have short shifts. My longest personal care shift is two hours. Understandably, many people don’t want to work for an hour or two at a time. On the other hand, though, what’s a person like myself supposed to do? I don’t need, want, or quality for around the clock care. I just need assistance during certain times of the day. Of the hundreds of employee packets I send, I’d guess I hear back from less than 25% of the people. When I do get a person’s paperwork, it’s a gamble whether or not the person will still be interested in the job by the time the paperwork gets processed.
With the Fiscal Employer Agency (FEA) I have, the amount of paperwork people need to fill out is ridiculous, and it takes at least two to three weeks (longer most of the time) to get people approved. By that time many have often found different jobs. Yes, I’ve thought about switching to a different FEA, but there are different factors that go into that., First of all, the last time I checked, the FEA I have was the only one that had an electronic time sheet system. For me, that’s a must. I have to do everything electronically. I haven’t looked into it recently, but I did hear that another FEA may have started an electronic system. Secondly, there are only certain dates when they do transfers, and you have to get all of your workers to fill out and sign paperwork months prior to the date. Frankly, that’s just not feasible in my situation. I have staff turnover almost monthly and I can’t imagine having to work between two different FEAs during the transition trying to figure everything out. In the future, I may reconsider because other FEAs are said to have faster turnaround times for new workers, but, for now, I plan to stay with one I have.
I currently have about 13 workers (besides my parents), but only six or seven are really active. I’ll just say you learn a lot a people when you’re the boss. It’s amazing how much work ethic vary from person-to-person. I’ve learned that with some people nothing gets done unless I’m right there watching. I’ve also realized that some just don’t care about how they treat otters. In addition to people giving me attitude when I ask them to do things, some people try to rush my cares so they can leave early. I’ve had multiple people quit on very short notice. Last year, a person who had been my main aide for several months, decided to quit showing up for shifts without any notice, and stopped responding to texts and calls! On multiple occasions, people have called in on short notice, including in the middle of the night, or not shown up at all. When that happens, I message everyone in my group right away to see if anyone can help me. Unfortunately, not many people are willing to pick up shifts on short notice. Depending on what shift it is, I often go without substantial food or using the restroom until the person for the next shift comes. I’ve learned to always have some finger foods (like pretzels and fruit snacks) in baggies on my table where I can access them. I’ve slept in my chair a few nights when nobody could help me to bed or get me up in the morning. It’s unhealthy on multiple levels, but you do what you have to. My parents always offer to come help, but, unless I’m stuck in bed in the morning, I usually say no because I don’t want to rely on them all the time.
Even with that many workers, I still constantly struggle to fill shifts. Since early May, I’ve been at my parents every weekend but one because I can’t find people to fill shifts. It’s incredibly frustrating because my parents just retired and want to travel, but, until I get more secure staff, they feel like they can’t go anywhere. Often, they want me to just travel with them so they don’t have to worry about me being stranded without anyone, but that’s a catch 22 because then I’m not here for the staff I do have or to collect paperwork from new workers. Plus, I sometimes have no desire to go where they want to go, and I feel like they should be able to travel without me.
The direct care shortage is nationwide, so I know I’m not alone in this battle. Agencies, nursing homes, and hospitals are struggling to find caretakers too. People say higher wages would help. While I agree it’d help some, I don’t know that it’d be a “fix all” to this—especially in my situation. I wish I knew what the answer was, but I don’t. Until a solution is figured out, I guess we just have to continue to try our best working with what we have.
By Stacy Ellingen, 2018-06-03
“Never judge someone by the way he/she looks.“ Most people are taught that beginning at an early age. While we all know it’s not right to judge one another, everybody does—it’s human nature. Regardless of age, race, religious belief, sexual orientation, economic status, or disability, as a society, we are taught to believe that everyone is equal and nobody is the better than anyone else. Theoretically, this means that everybody should feel like they “fit in” everywhere all the time; however, it’s not realistic. Most people experience feeling “singled out” negatively more than once in their life. Often, it’s unintentional and purely situational, but, regardless, “sticking out” usually isn’t something to be desired. People with disabilities often “stick out” more than most—it’s just a fact.
My disability is pretty noticeable. Some people have very mild cerebral palsy and the effects often go unnoticed by many. I happen to have a pretty severe form of cerebral palsy. In addition to using a power wheelchair, I can’t verbally speak clearly and because of my fluctuating muscle tone, my arms and legs often move unintentionally. My head often droops and sometimes my mouth hangs open or my tongue sticks out. I also drool. There’s no way around hiding the fact that I’m “different.”
As I’ve explained in previous journal entries, I accept that I have a disability, but it doesn’t define who I am. Unless a situation presents itself, I don’t think of myself as being disabled. Growing up, I guess I became accustomed to “sticking out.” Since I was in regular classes, classmates got used to having me in class and understood what I was capable of. It wasn’t a big deal. College was unique. UW-Whitewater specializes in serving students with physical disabilities, so I certainly didn’t stick out on campus. In classes, sometimes I felt like I stood out because I was the only one with visible limitations, but again, after people got to know me, it wasn’t an issue.
As I get older, I notice I feel I stick out more at social gatherings. Whether it’s a retirement dinner for my mom, a friend’s wedding, or a cousin’s graduation party, I feel like I stick out like a sore thumb. I think it has a lot to do with meeting new people who are unaware that the person that the event is for has a relative or a friend who has a disability. Now, obviously, in all three of those scenarios, I was invited because the person wants me there and they see past my disability. Often, at such events, the harder I try not to stick out (besides being in wheelchair), the more my muscles tense up which causes unintentional movements and noises. Unfortunately, it’s just how my body works. My mom, dad, and sister know not to tell me to try to fix it because it only makes it worse when I try harder. I also need to be fed at these events. Being fed automatically draws attention to oneself. Again, the harder I try not to make a scene, the more my body will react while eating causing me to cough and food to drop.
Admittedly, I also have some social anxiety when attending events where there are people my age. While I know most people don’t expect me to get married and have a family, it doesn’t mean I don’t crave that. I realize most people probably don’t even think about it (which is good), but I often feel singled out because I don’t have that. Seeing friends and cousins with significant others and children at events can be pretty hard. As happy as I am for them, it makes me wonder if it will ever happen to me. The older I get the less likely it is and that’s not an easy thing to accept. I try my best to experience happiness through other people’s eyes, but, sometimes, when everyone else around you seems to have what you desperately want, it can be hard. As hard as it can be, I’m eternally grateful that I have amazing friends and family who always include me despite my circumstances. I’m one lucky girl!
I’d love nothing more than to actually walk down the aisle and stand with the other bridesmaids at my friend’s wedding this weekend; however, I have a different path in life. Instead, I will proudly roll down the aisle thinking about how lucky I am to have the bride as one of my best friends for over 25 years. Will I stick out? Definitely, but I’m honored to be in my friend’s wedding. She obviously doesn’t have a problem with my circumstances, so why should I?
Having a pronounced physical disability often makes fitting in difficult. Some people are completely okay with not fitting in because of their limitations, and others work hard to hide theirs. I think I’m somewhere in between. While usually I don’t have a problem with being seen as different, there are times where I desperately want to fit in. It’s during those times that I need to remember that I was chosen to have a different path in life. My purpose in life is different than most; I’m here to show people what is possible despite the curve balls life throws at you!