Category: Stacy's Journal
By Stacy Ellingen, 2020-10-06
“I think he already knows I’m different,” I said to my mom as I was playing with my then almost three-month-old nephew as she was holding him in her lap. I know the statement caught her off guard because she told my sister what I said later that day. Normally, my friends and family know that if there’s a big event that happened, I’ll write about it in the next month’s journal entry. I was fully expecting to write about becoming an aunt in my July journal entry, but that didn’t happen.
It’s commonly known that little most little girls dream of becoming a mother. They play with baby dolls and pretend to be a mommy. I was no different. I had many dolls and I enjoyed pretending to be a mommy. Obviously, as I grew up, I realized that the becoming a mother wasn’t as easy as it once seemed. It wasn’t until my younger cousins and best friends started getting married and having babies that I realized becoming a mom probably isn’t in the cards for me. My love for teaching and little kids makes that reality even a harder pill to swallow. Personally, I think it’s one of the hardest parts about having a physical disability.
When my sister got married, I knew she and her husband probably would eventually have kids. On a Saturday morning last November, she texted me, “I have an idea of what you can get me for Christmas.” Not thinking anything of it, I casually texted back, “Great. What?” She sent me Amazon link to the book, What to Expect When You’re Expecting. Of course, I texted back congratulations right away and asked when she was due. After the news set in, I’d be lying if I said I wasn’t sad. Don’t get me wrong, I was over the moon for my sister and her husband, but selfishly, I was feeling sorry for myself.
The holidays were right around the corner, and I knew she would announce it to our extended family. They announced it to a small group of people at Thanksgiving. For a few seconds I had to compose myself. Again, very selfishly, it’s not the easiest thing to witness everyone super excited over something you desperately desire, but know will likely never happen to you. I tried to hide my tears as much as possible. Having said that, though, my sister and parents understand why things like these are emotionally challenging for me. That’s part of the reason why my sister told the other side of the family before we got together for Christmas. My sister sacrificed the excitement of being able to tell people in-person to make it easier on me. I feel awful she does that with so many things, but I truly appreciated that one.
As I have talked about in previous entries, I lived with my parents the first three months of the pandemic. Understandably, my mom was beyond excited to become a grandma. Her excitement was overwhelming at times. Sometimes, all I could do was go in another room. I couldn’t help but think that if circumstances were different, I would have had her first grandchild. That said, my mom continues to be the only person I can talk to about how I feel. It was very hard for her because she was so very excited, but, yet, she knew I was having a hard time. I feel bad for her because she has to see so many situations from both sides.
My first nephew was born in mid-June. My brother-in-law texted his sister and I sharing the exciting news. My mom got to finally send the text to the extended family that she had been waiting to do announcing the birth of her first grandchild. Admittedly, that text got to me. As happy and excited as I was for my sister, I couldn’t help but wonder if I’d be a mom if things were different. Due to the pandemic, nobody could visit them in the hospital. My parents went down and saw him the day after they got home, and my parents took me down to see them the next weekend. I was so happy that I was living back in my apartment by then, my parents could have that first visit alone. When I went to visit, I tried to prepare myself because I knew it’d be kind of challenging for me emotionally, but I desperately wanted to be excited for my sister.
I’ve been lucky to see my nephew four or five times since he has been born. Each time, I recline my wheelchair back and my sister sets him on my lap multiple times. In the beginning, we used a bopsee pillow to help support him, but now he’s big enough that he can lay on my arm pretty good. I know he will grow up knowing about my disability because my sister and brother-in-law will talk to him about it. Will there be a time period where he’s scared of me because I’m different? Likely. It happens with most little kids, but we’ll work through it.
There was like a 10-day time period right around the birth of my nephew that six of my friends announced their pregnancy on Facebook. It was unbelievable! With my emotions already spiked, seeing that didn’t help. Again, I’m so incredibly happy for all of them; it’s just hard knowing I’ll likely never get a chance to experience that. I admit, those were some tough weeks which is why I decided to wait to write about this topic.
The feeling of selfishness makes a person feel even worse in situations such as these. I feel bad really for feeling sad about other people’s joy. It’s an awful feeling. However, I’m slowly beginning to realize it’s an unavoidable part of life. I will always have the yearning to be a mother. That’s part of being “normal” enough to have that desire. Do I still feel sad when I see friends and family enjoying life with their children? Absolutely. I don’t think that feeling will ever go away. I’m slowly working on ways to try to deal with it.
When my sister heard what I told my mom that day, her response was, “that may be true, but you know what? He’ll grow up knowing you, so, to him, you won’t be different.” If that doesn’t sum up the meaning of family, I don’t know what does!
***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, 2020-08-31
Most adults have some degree of privacy. Growing up, parents usually teach kids what should be kept private and what’s okay to share with others. Parents often gradually give their children more and more privacy as they grow up. From very basic things early on, such as using the restroom by herself/himself, to more complex things as they grow up, like dating, children are taught the concept of privacy. When we become adults, we decide our own level of privacy. When people find her/his significant other, they often share private things with them. Privacy is a human right. In many scenarios, it keeps our dignity as people. For people with disabilities, having any degree of privacy often is nearly impossible.
As a pretty avid disability advocate, I’m generally a pretty open person. Since I believe part of my purpose in life is to educate others on what people with disabilities can do, I share my personal experiences, thoughts, and emotions with others in these journal entries, videos on the YouTube channel, media interviews, presentations, and other avenues. It’s my way of feeling like I’m helping others. While being open is part of my personality, I think having a significant physical disability has forced me to be open. Let me explain.
As I’ve explained in several of my previous journal entries, I need physical assistance with all of my basic needs. I need somebody to literally undress me, lather me up and rinse me in the shower, and get me dressed again every day. Every time I use the restroom, somebody needs to pull my pants down, clean me up after I go, and then pull my pants back up. I share these examples not to invoke any sort of pity, but rather to demonstrate how little privacy somebody with significant physical limitations may have. Obviously, I don’t really have other options in these circumstances, and I’ve, in essence, “gotten used to it.”
Physical body privacy isn’t the only sort of privacy people with disabilities often lack. Recently, I ran into a situation where a care worker quit because she read text messages on my phone between my mom and I talking about her. Now, yes, we were wrong to be talking about her (I was complaining she was lazy and always causing issues), but she had no business reading my messages. It wasn’t like I was texting right in front of her either; she had to have gone into my phone and read them when I was out of my chair (my phone is mounted on my chair). Yes, I realize I could have a passcode enabled to open my phone, but that brings up more issues (if I had to enter a passcode every time I use my phone, things would take me even longer to do). What really irritated me about this situation is that the worker obviously knew I use my phone and specifically text messaging as my main means of communication with my parents, and she felt she had the right to go in and read my messages. Really? I guess maybe I put too much trust in people. Again, my mom and I acknowledge we were wrong to be talking about her, but it’s tough when I rely texting to communicate.
Another thing people with disabilities often have little to no privacy with is finances. Many rely on government assistance to live. When you receive government financial assistance, one has to report any income and assets she/he has. There is a review done regularly for eligibility for Supplemental Security Income (SSI). I live in subsidized housing, and I have to do an annual recertification where I have to provide all of my financial information. The information is used to determine what my rent is for the year. While I understand why this needs to be done, it can be a little daunting. Providing the information year after year is not only time consuming, but it can also mess with emotions. While I’m not ashamed that I need government assistance, it’s not something I’m proud of or want to be reminded of either.
Having little to no privacy in life isn’t fun, but it’s something I’ve learned to live with. When you rely on others for so much physically, you try to savor any dignity you can. It can be as simple as being able to pick up a Kleenex to blow my own nose. As silly as that sounds, using a tissue myself takes a lot of concentration and effort, but I do it because I’m able to. I realize I’m fortunate that I’m living in my own apartment. While I gripe about having limited privacy, people who live in group homes or facilities have even less.
Privacy is one of the few things that’s hard to modify. It’s something that we, as people with disabilities, have to try to figure out how to persevere on an individual basis. For myself, I realize that giving up some privacy also means that I’m able to be as independent as possible. That sounds like a weird analogy, but by having people come in to help me, I’m able to live independently. That’s what I try to remember when I have issues with privacy. It’s part of this unique journey I’m on called 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, 2020-08-02
From a young age, most people are given choices and are encouraged to try new things. To begin with, parents give children very basic choices such as the choice between juice and water. As kids get older, they began to learn consequences and benefits of their choices. Parents often encourage them to try new things and then help them make decisions. Making decisions is a huge part of life. As adults, our choices often have significant (both positive and negative) repercussions. Some choices are very easy while others are almost impossible to make. For all people, having choice is a critical part of life; for people with disabilities, having choice and being able to self-direct often comes with many obstacles.
I’ve been out of college over 11 years now, but each August, I find myself reflecting on one of the biggest decisions I’ve ever made. It was a decision I made 17 years ago. At the time, I had no idea of how big of a decision it was. I just had graduated high school and was preparing it to go off to college. Sure, I had some extra things to get ready, but I was getting ready for college just like all of my friends were. It didn’t hit me that I was about to take a huge leap of faith and move away and be on my own. I was just doing the “normal” thing. Now, I realize what a life-changing decision that was. I had no idea what I was getting myself into which, looking back, was probably a really good thing. I know my parents—especially my dad—would have rather had me start out at UW-Fond du Lac, but, nevertheless, they supported and encouraged me to try it at UW-Whitewater. It was the best decision I’ve ever made. Yes, I’m very proud I earned my Bachelor of Arts degree, but, beyond that and perhaps more importantly, I proved to myself and others that I could live on my own. Like I’ve said in past entries, this was a huge relief to my parents knowing I could physically manage (with the right supports) without them. I often wonder where I’d be today if I hadn’t taken that giant step. Where would I be? Would I be living on my own? Would I still be living with my parents? What would I be doing? It’s honestly a scary thought. There’s no doubt in my mind that that one decision has shaped and will continue to shape my life forever!
Most choices obviously aren’t as monumental. Recently, I found myself wrestling with the decision whether or not to resign from one of the state disability councils I was on. I had been on this particular council for three years, and while I enjoyed my time on it, I never really felt a real connection to the subject matter. The role of this council was more about funding allocations and policy for a certain type of organizations which provide services for people with disabilities rather than actually creating change that directly improves lives. I tried my best to learn and become interested in the council, but my interest just wasn’t there. When I was appointed, I filled someone’s spot who left in the middle of their term and then I started my own term. Originally, when it became clear that I wasn’t passionate about this, my plan was to finish out my two-year term and just not apply for a second term. My term would have ended next July; however, the council began updating its policies and there was talk of having terms being three years each (instead of two). That’s when I really started questioning whether I should resign. It was hard because I’m friends with some of the council members and I knew they’d be disappointed, but I knew it was best to resign because I wasn’t fully invested in it. I knew it wasn’t right to take up a spot on the council when I had these feelings, so ultimately, I decided to resign. Those weren’t pleasant emails to send, but I feel it was the right decision.
Care is another area where having choice is crucial for many people with disabilities. When you rely on caregivers to help you live life, you have to have some choice about who comes into your home and when. Although it’s often denied, some long-term-care programs don’t allow for much choice. Some people with disabilities need assistance in making decisions about finance and care; while others are capable of self-directing everything. As you know from reading my past entries, I’m a participant of the IRIS Program which allows me to self-direct every aspect of my life. Not only do I have choice of how to spend my budget, but I also can choose who works for me. That’s a huge plus of being in IRIS. When I had care agencies in the past, if I didn’t get along with a worker, I’d have to talk to management, and, unless it was an extreme safety situation, I’d have to deal with it and continue with the person. Now, although I try my best to make things work and get along with my aides, I can choose to terminate a person if things just don’t work out.
Making decisions and having choice is part of life. We make hundreds (or probably thousands) of choices on a daily basis. We learn from our choices—sometime we learn the hard way by making bad choices, but that’s ok because those choices we make that shape our life into what it is.
***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, 2020-07-01
How far is too far? That’s a loaded question in this day and age. With the ongoing pandemic colliding with the outbursts from the equity movement, 2020 will be read about in history books for years to come. Many people feel like the country is in shambles. People have different opinions about the two situations which creates tension everywhere. Different beliefs even among families are causing more unease during this unprecedented time in the world.
I’ll be the first to admit, I’m a pretty conservative person—I always have been. On most things, I listen to the experts and follow the advice of professionals. My immediate family is the same way, but I also think living with a disability has made me extra strict on some things. That’s why it was unusual that I wasn’t worried when COVID was first talked about back in late February. My parents were worried about it, but I didn’t think it was going to amount to anything. It wasn’t until everything starting shutting down in early March that I began to worry. States began implementing stay-at-home orders, and the number of cases began to skyrocket. News stories about hospitals prioritizing ventilators and refusing to treat people with disabilities began popping up in my Facebook groups. What would happen if I would get it? It’s a question that still lingers in my mind today.
I’ve noticed that many people have eased up on the guidelines such as mask-wearing, social distancing, and attending large group gatherings. While I understand we all are sick and tired of living in a bubble for so long, the virus is still very prevalent across the country. It’s very hard to understand this when people are asymptomatic, but yet, are carriers of the virus. This is where the concept of being accountable for one’s own actions is so important. A person may not be overly concerned about contracting the virus herself/himself, but the thing that the person needs to remember is that she/he can spread it to others without even realizing it.
Obviously, nobody intentionally means to spread the virus to other people, but when people choose not to follow the guidelines, it often seems like people don’t care about others. This can be very frustrating and cause tension among friends and family. To those of us who are concerned about getting the virus, it’s hard to understand why some people aren’t taking the recommended precautions. The saying, “if you don’t feel the need to do it for yourself, do it for others” comes to mind during times like this.
Taking responsibility for one’s own actions carries into the equity movement as well. I personally believe that every single person on earth is racist. Most of the time it’s unintentional and we don’t even realize it. As a society, I feel we need to do a better job of understanding different cultures. Regardless of what culture it is--ethnicity, sexual orientation, disability, economic status, or something else—we need to do a better job of understanding people.
There have been many posts on social media about comparing ethnicity inequality to disability inequality--some agreeing; others disagreeing. While I agree that there are some similarities, I don’t think now is the time to compare. I don’t think it’s right to draw attention away from the ethnicity inequality crisis. Yes, even though the 30th anniversary of the Americans with Disabilities Act (ADA) is this month, there are still many inequalities for people with disabilities; however, we need to remember that we’re not the only culture still facing barriers.
Both of these issues boil down to having respect for one another. Yes, people have the right to have their opinions of what’s wrong and right and what people should and shouldn’t do, but we need to be respectful. How far is too far? That’s a rhetorical question. How far should the government go to enforce the pandemic guidelines? How far should law enforcement go to ensure equality? How far does society have to go to have equality for all people? Those are some questions that we may be pondering for years. Unfortunately, I don’t believe either situation will be resolved anytime in the near future. It’s my belief that both situations may take many years to resolve. My hope is that people will be more respectful of others as we create this new normal. Not only will it help to resolve the issues at hand, it will bring us closer together!
By Stacy Ellingen, 2020-05-28
What happens if my parents both suddenly pass away? What would happen to me? What would I do? Where would I go? These are not normal questions for a person my age to worry about, but for many adults with disabilities these are very real concerns. I recently turned 35 years old and my mom casually asked a deep question. Are you where you thought you’d be at 35? My response was I don’t know where I thought I’d be, but I’ve learned that the system isn’t setup for a person like me. “And that’s really scary,” I added. For full disclosure, I may have added some choice words to that statement, but you get the gist of what I’m trying to say. Let me explain.
Before last Christmas, I knew I needed to hire some new caregivers because I had people moving on and students who were going on clinicals. I posted and hired some people before the holidays. Due to paperwork and approval time, I couldn’t have them start until after the holidays. As it turned out, all of the workers we just hired were no longer interested in the position. We held interviews in the middle of January. We had six interviews, but unfortunately, none of the six showed up. By that point, I was beyond frustrated. My parents and I talked, and I decided it was time to try something different.
I made the tough decision to try Family Care. My mom called the ADRC and a case worker agreed to meet with us. Leaving IRIS was the last thing I wanted to do, but I felt I had no choice. I had been in IRIS over 10 years, and had become quite involved with advocacy for the program. I loved every part of it, but I just continually had problems finding workers. By leaving IRIS, I felt like I was giving up on myself. I hated it, but kept telling myself it was for the best. I dreaded the meeting with the ADRC. Luckily, the case worker that my mom and I met with was very nice and understood my situation. We asked many questions and we learned most of the questions we had were for the Managed Care Organization (MCO) I’d choose. I chose the MCO I heard the most about from others. We filled out the transfer paperwork, but before sending it in, I asked the case worker to hold off until I told people at my IRIS Consultant Agency know what was going on. It was very important to me that I be the one to tell them what was going on because they had been excellent to me. The case worker understood. When we were doing the paperwork, very admittedly, I broke down. With tears in my eyes, I said, “I just don’t want to end up in a (group or nursing) home.” The case worker assured me that that’s a last resort.
Later that evening, I wrote emails to the people I needed to tell. Everyone was understanding of my situation because they knew the constant struggles I was having. They cautioned me to be assertive, and to not to give up all self-direction. Those were very hard emails to send because I knew I didn’t want to switch and felt like I was letting them down, but again I kept telling myself it was for the best. After I sent those emails, I gave the case worker the okay to send in the transfer paperwork. About a week later, I finally got an email from a MCO case manager about setting up a meeting. It was another week before they could meet with my parents and I. Already red flags were popping in my head because I’m not one to wait on getting things started.
A week later, the case manager and nurse came to my apartment to meet with my parents and I. We asked a lot of questions and got the process started. They told us it may take two agencies to staff my shifts. I wasn’t sure how that’d work, but I was okay to try it. I found a couple things very interesting. Family Care doesn’t allow hours for anything other than personal care and basic housekeeping chores. They wouldn’t give me hours for workers to assist me if I wanted to do anything fun such as meet friends for dinner, go shopping (for fun), or go to the movies. I could use my allotted hours to do those things, but since I wouldn’t have budget authority, there was quite a discrepancy in the number of hours I’d get (for Supportive Care). It was interesting to learn that I don’t qualify for 24\7 care unless I move into a group home or nursing home. Not that I want or need that right now, but it’s interesting that because I’m cognitively fully aware that I don’t qualify for around the clock care even though physically, I need so much assistance. Nevertheless, we proceeded with putting together a plan for me.
Over the next several weeks, under their direction, my parents and I met with a few care agencies. I signed a bunch of Release of Information forms allowing the MCO to talk to agencies about my needs. The agencies we actually met with only could take a couple shifts per week and most didn’t have a reliable backup system. The case manager supposedly talked to 12 different agencies and had very little luck. All the while, I was in limbo with my current workers trying to figure out what to tell them.
The idea of having multiple agencies began to scare me more and more. I asked what would happen if an agency decided they could no longer fill the shift. The case manager said they’d ask another agency if they could do it. I then asked what happens if no one else was able to. She said they’d have to look for a place for me. I’ve been in the advocacy world long enough to know, although its many times denied by organizations, that exact scenario happens all too frequently. I now see exactly how others with similar circumstances end up in nursing homes and group homes.
After a couple more weeks communicating with the MCO, I talked with my parents and decided to stay on IRIS for the time being. I’m incredibly fortunate that as long as they’re able to physically take care of me, my parents will not allow me to go into a facility. This is a huge sacrifice on their part. We’ve been talking about how we both need to make sacrifices in order for this to work. They’ll be there for me as long as they are physically able, but I also need to let them travel a little bit which often means going with them. As snooty as it sounds, I often don’t like traveling as often as they do and where they do. That said, I realize that I need to let them somewhat enjoy their hard-earned retirement. We’re working on finding a happy medium.
In late April, I posted for caregivers, and we set up a where we had five interviews. Unfortunately, again, we had five no shows, but we had better luck in early May. I now have three or four new workers. It’s a process getting everyone trained and comfortable, but we’re getting there. I may even be able to stay at my apartment most of June! That hasn’t happened in months, so after a very rocky first half to the year, things are looking up a little bit.
However, I know how quickly things can change and I know there will be several more bumps in the road. During the conversation with my mom I told her I feel like the “system” isn’t made for people like me. Now, at least we’ve explored the all the options and know how Family Care operates. I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better. We, as humans, deserve it!
By Stacy Ellingen, 2020-05-07
“Come on, Stace, let’s go for a ride,” my dad has said almost every day during this quarantine. Most people in today’s society had no choice but to quickly experience what it’s like to stay at home all day, everyday. For many people, this has been a huge lifestyle change. Many people are used to going to multiple places every day. Whether it’s to the grocery store, a hardware store, work, a restaurant or somewhere else, most mid aged people are accustomed to going somewhere every single day. However, for many people with health conditions or disabilities, staying home is the norm.
As I’ve explained in previous entries, under normal circumstances, I leave my apartment once a week to go grocery shopping. Between care and transportation, it’s just not feasible to go out much more than that. I’ve gotten used to it, and it’s normal for me. Of course, thanks to my family, I do have the opportunity to travel for various things pretty often, but, for the most part, I’m used to staying at home all day alone, in my apartment. I have learned to find enough stuff to do to keep busy, and, thanks to the Internet, I’m able to do almost everything I need to from my computer.
So, I laugh to myself when I hear people complain about being “stuck at home.” My parents aren’t very good at it. As I said above, my dad and mom go for a ride almost every single day. Most of the time, they drive around country roads and don’t even get out. In the beginning, I went with, but it got boring. They don’t understand it, but I’d much rather stay home and actually do something. Whether it’s read a book, be on my iPad, or watch something on Hulu, i like doing something rather than aimlessly riding around in the back of a car. I’m guessing that’s because that’s what I’m used to doing.
That said, I think this quarantine will bring out some positive aspects for people with disabilities. It will show society that a whole lot more things can be accomplished from home. A lot more jobs can be done from home, which in several situations has been often a difficult accommodation to get. Another thing that will become more popular are Tele-health visits. As we know, transportation continues to be a huge obstacle for many of us with disabilities. Being able to meet with doctors online rather than going to a clinic or hospital would be much easier. I also believe other things like grocery delivery and online therapy sessions will become popular and more affordable.
Another thing that has resulted from this is how we socialize. Yes, we all miss being able to give our family and friends hugs: however, the concept of using video chatting has exploded. Before the pandemic, video conferencing was mainly used for small meetings where one person physically couldn’t make it. Now, everyone is using it. Whether it’s a meeting with over 100 employees, a school classroom, a happy hour with friends, or something else, video conference calls have become a regular daily occurrence for many people. Again, for many of us who have disabilities, this is exciting news. Due to many different factors, social isolation is often not avoidable for many. Video conferencing becoming more popular in today’s society and will likely allow people to socialize more who otherwise wouldn’t be able to.
Life as we knew it probably won’t ever be the same; however, like with everything, there are silver linings. We need to focus on what those are and stay positive for one another!
By Stacy Ellingen, 2020-04-16
Social distancing Mitigation. Isolation. Safer—at—Home orders. Terms such as these didn’t have much meaning to most people until the beginning of March. Now, thanks to COVID 19, such vocabulary has become the new norm in today’s society. Regardless of background, race, economic status, gender, beliefs, or any other factor, almost every single person in the country has been affected by this pandemic in some way. Whether its businesses closing leaving you without employment, having to cancel elective medical appointments, concerts and sporting events being canceled, wearing gloves and masks to get groceries… the list is endless. For most people with disabilities, a pandemic of this magnitude often brings on some unique challenges.
When the pandemic started in early March, I was in the middle of switching care situations (which I will write about another time). Due to this, things were already in limbo and I didn’t have enough workers as it was. I was at my parents’ house when Governor Evers placed the state of Wisconsin under a Safer-at-Home order. That meant most of my care workers I had would be going home, as they are college students and their classes would all be online. All of a sudden, and for the unforeseen future, we all have had to become homebound.
At my parents’ house, while I love and appreciate all they do for me, it is totally different living with them again--for now over a month. First, I laugh because while most people are learning to work from home, I work from home all the time, but now at my parents, I don’t have all the technology, so working looks different. I’m doing my best. Second, while all my basic needs are met, I’m used to and miss having someone with me just to do what I need and want for a certain number of hours per day. While my parents help me with what needs to be done, I feel like I can’t be too picky with my needs. For example, I’m on their schedule, so I have to go to bed much earlier than normal.
For people with physical disabilities, like myself, social distancing when you require assistance with basic needs is not possible. For those who do have agencies, or many different people coming into help, the desire for masks and gloves is there, but from what I’m hearing, they are still in short supply. Personally, I have enough pairs of gloves for my workers, but am not certain about what to do about masks. Everyone has their own individual preference.
For me, the social isolation, is not really a big deal. I do miss seeing my aides because I ‘ve become friends with most of them, but I normally don’t go anywhere except the grocery store regularly each week. For others with disabilities, this might be the worst and most difficult part of this pandemic. Zoom, Google Hangouts, Skype, and Facetime all help, and are the new normal for us now.
Entertainment looks different for everyone. For me, I have stayed close with friends and family, using technology. I have caught up on many of my shows that I like with Netflix and Hulu. I also read a lot and have continued to do that. I have gone out for walks in my parents’ neighborhood, but have not been in any type of stores or restaurants since the order came through.
Non-essential medical and dental procedures have also been shut down, so I have not been to any doctors since February. These services have to continue for only the most needed of procedures. I’ve had to cancel a non-essential test I had scheduled. Early next month, I have to get my Baclofen pump refilled. That can’t be rescheduled, so that’ll be interesting!
The anxiety of when and how our country will open up and return to the normal is a daily concern of everyone. It may never be like it was before. People will be apprehensive, so large group gatherings in sporting events, theatres, restaurants, churches, shopping areas, concerts and the like will look different. It is likely that this will be a slow process.
I’m hopeful that the curve will begin to turn downward and we start to open up for business as a country soon. Until then, stay safe and healthy!
By Stacy Ellingen, 2020-03-06
It’s Friday night and it’s been a long week. Some friends are meeting up for dinner and invited you to join. Without knowing or caring where, you accept the invite. You’re excited to kick back and relax. You get ready to go and you text a friend asking where they are meeting. The friend responds with the name of a popular restaurant in town. Suddenly, you cringe and rethink your decision to go out. The place they chose is definitely a really cool and fun place; however, accessibility is less than ideal. Scenarios like this one play out frequently for people with physical limitations. Although most restaurants nowadays are “accessible” according to regulations, it doesn’t mean that they are totally accessible. Again, the word “accessible” is often loosely used and widely varies when talking about restaurants.
Simply put, I don’t leave my apartment very often. In fact, I have one scheduled outing per week and that’s to the grocery store. Between cares and transportation, it’s just not feasible for me to get out more. That said, thanks to my family, I do get to go to restaurants pretty frequently when I’m with them. Everything from getting in the door to eating takes some extra consideration. Most restaurants don’t have power doors In fact, I don’t think I’ve seen one that does) and many have a two door entrance which makes it very difficult for people with mobility issues to get in and out. Most of the time depending on the entrance two additional people are needed to hold the doors because it’s usually too tight for the same person to hold both doors open. Even with two people helping hold the doors, it can sometimes be tight because the doors don’t open wide enough to get a wheelchair through without running over people’s toes. It’s often a game trying to get and out of places.
Once in the restaurant, depending on how it’s setup and how crowded it is, it’s often a maze trying to get through and finding a place to sit where your equipment (wheelchair in my case) isn’t in the way of the wait staff or other customers. Some restaurant layouts are better than others. Some have nice wide Isles where there’s a nice amount of room between the tables; some are so narrow and jammed together that I literally get my wheelchair stuff stuck. People are usually pretty nice about moving chairs in or getting up so I can get through, but sometimes it’s embarrassing when a big group has to move When the hostess seats us, my parents usually kind of say what would work best. If I was with friends, they would not know to do that.
Table heights vary from place to place as well. In bars, the bar itself is usually way too high, but I have seen and been in some with a wheelchair counter. Usually none of the tables are at a level, where I can pull up and get my joystick underneath it, so I end up sideways on an end, which usually blocks at least one walkway.
In my personal case, I also have to position myself next to a caregiver so that they are able to feed me. This means I usually am on an end or blocking some pathway for wait staff or customers.
When it comes time to order, wait staff frequently believe that I am not capable of ordering. They either pass by me and ask my caretaker what I would like, or raise their voice two octaves and talk to me as if I were a two year old. It makes me laugh when I remember one time, when the wait staff brought me crayons and a placemat to color. Another thing that happens, is that I get very strange looks if I order a drink or cocktail. People need to remember that just because we have disabilities, doesn’t mean we can’t enjoy what everyone does, and most of us are able to make choices based on our own preferences.
This is where self-advocacy comes in. Myself and others will try to assert ourselves to help educate the public on what we ARE able to do, and not focus on what we are not capable of. That said, I love and intend to keep on going out to eat with friends and family whenever I can.
By Stacy Ellingen, 2020-02-12
What is normal? That’s a loaded question with no right or wrong answer. When people ask it, it’s often meant to be rhetorical leaving people to ponder. A common response to that question is, “there’s no such thing as normal.” That’s so true! Regardless of the circumstances, normal is usually what everyone strives to be. In the disability community, the word “normal” is something we many times laugh at because it truly doesn’t exist in our world.
Sometimes, people ask me if I could have one day- 24 hours- without CP, what would I do? In other words, what would I do if I could be “normal” for a day? I honestly don’t even know. I can’t even imagine. First, I have to be realistic and say I understand that if there was a way I could be without CP for a day, I’d probably have to be a psych ward because it’d be such a shock to my entire body at first, I probably couldn’t handle myself.
With that said, what’s the first thing I’d want to do? Yes, I have thought about it. It’s fun to daydream about. First of all, I’d want to know when it was going happen so that could have my close family and friends could be there. When the magic first happened, (again, I’m fantasizing about this--realistically, anybody in that situation would likely need psychiatric treatment after that big of a shock to the body) I’d stand up and start hugging people. I’m not sure what I’d talk about, but I wouldn’t shut up the entire day! After hugging everyone there, I’d walk around the entire house (I’m assuming that I’d be at my parents house where I grew up) and experience walking up and down the stairs. I’d carry any babies and little kids around that were with me-–something I long to do. We’d then go somewhere where I could try playing lots of sports just so I could see what it felt like to play the sports I love to watch. Then, we’d go to every inaccessible place in the area, so I could experience it. I’d visit friends’ houses and go up the lighthouse. I’d go to small jammed restaurants and eat the messiest foods. When we got back to my parents, explore the house some more--do simple things such as run through the grass and ride a bike. I’d probably try driving a vehicle too just so I could experience it. I would end the day by walking around the neighborhood and chatting with my friends and family until my time was up. That’s how I’d spend my day!
Is my fantasy realistic? Absolutely not. If given the chance, would I do it? Probably. I’m not sure how I’d handle going back to having cerebral palsy. On one hand, I think it’d be incredibly hard because you just experienced a lot of things you’ll likely never be able to do again; however, part of me wonders if you’d almost miss having the limitations. It’s interesting to think about, but, if given the chance, I think I would do it.
Now, I know and understand this is one of those controversial topics among people with different abilities. Many people feel their disability is a part of who they are and they wouldn’t change it. While I respect their opinion, that’s not me. Like I’ve said in past entries, yes, I accept that I have cerebral palsy and a it’s part of my life; however it doesn’t define the person I am. For that reason, if given the chance, I’d love to experience “normalcy.” I’m not expecting it in my lifetime. If it happens, great, but if it doesn’t, that’s okay too.
Normalcy is something we all crave and strive for. That said, definitions of “normal” widely vary. Unless referring to something static like temperature, the word usually can be used pretty loosely. While we all have our own unique definitions, society has its own that many people continue to strive for!
By Stacy Ellingen, 2020-01-19
Whether it’s for a fun getaway or for work, staying at a hotel is usually an experience people enjoy. Getting away from day to day life is often something many people look forward to. Regardless of the length of time, staying in a different environment is usually kind of fun. Whether it’s the waterpark, the sauna, the workout room, or a different amenity, it’s often fun to look around and see what the place has to offer. For people with physical disabilities, exploring hotels is also enjoyable experience; however, we often look at different things. How many people walk into a hotel room and the first thing they look at is the toilet seat? I certainly hope not many people, but for me that’s reality. Yes, it sounds absolutely ridiculous, but it’s true. Let me explain.
In past entries, I’ve mentioned that as a child my family traveled a lot. My parents wanted my sister and I to see and experience as much as we could. We stayed in hundreds of hotels across the country and beyond. Obviously, each hotel has different amenities and features. “Accessible” rooms are available at most places these days which is nice; however, we’ve learned the word “accessible” can widely vary. Many times, we’ve found that it’s better to ask for a reason with “more space” rather than an accessible room. In many cases, accessible rooms have only one king-size bed in them. For obvious reasons, that doesn’t work so well when there are multiple people staying in the room. The accessible rooms often aren’t the rooms with the most space either. Using a power wheelchair, I need space to maneuver around. I’ve been in rooms where there wasn’t enough space to turn my chair around—I had to literally back my chair out of the doorway into the hotel hallway. We’ve learned that when we book a hotel room, we not only ask for an accessible room, but also a room with lots of space.
Often, accessible rooms have roll-in showers. Some hotels provide a basic shower chair; some people bring their own. My shower chair is very customized and pretty cumbersome, so I’m not able to travel with it. For various reasons, I can’t take a shower when I stay at hotels, so I sponge bathe and wash my hair in the sink. That can be if (and it’s a big if) my wheelchair can get into the bathroom; I usually can’t fit it under the sink. My mom and I have learned to get creative and can usually figure out a way. As I mentored earlier, when I first enter a hotel room, the toilet seat truly is the first thing I look at. Why you ask? Because I’m notorious for breaking them. Many hotels have inexpensive toilet seats with plastic hinges. When I sit on them and move to stabilize myself, the hinges often crack. At my apartment and at my parents’ house, we’ve put knobs on the bottom of the seat so it can’t shift back and forth. Obviously, we can’t carry a toilet seat around everywhere we go, so my dad brings little toolkit along and he tightens the bolts on the seat. When I’m on those kinds of seats, I have to be careful how I reposition myself. I’ve broken way too many!
Another thing in hotels that sometimes cause issues for people with disabilities are the beds. Depending on ability, higher beds are easier for people to transfer in and out of; for some, lower beds are better. Everyone has a preference about bed mattresses. Some people like a very soft pillow top mattress while others like more of a firm one. Most hotels seem to have pillow top ones. For me, personally, those don’t work out to well because my body sinks in and I don’t have the muscle strength to move my extremities around on it. My muscles get very stiff on pillow top mattresses, but obviously when making reservations,, people can’t request a certain type of bed.
We’re a big swimming pool people in my family—we love to swim! Swimming is so good for my muscles. When we go on vacation, it’s usually centered around swimming. For people with physical challenges, just accessing the pool deck can be a struggle. Although, it’s vastly improved in recent years, stairs would be the only way to access the pool area at some hotels. When I was young, my parents took my stroller or manual chair on vacation, so my dad would just tilt me back and bump me up and down the steps. That changed as I got older and wanted my power chair so I could move around independently. We’ve had to cancel reservations and find a different hotel due to this. Once I’m in the pool area, another challenge is getting into the actual pool. Thanks to a law, hotel pools are now required to have a chair lift to help people with various physical limitations get in and out of the pool. Most pools we’ve been at recently do have one; however, the problem is either the lift isn’t working or the hotel staff doesn’t know how it works. Over the holidays, my parents and I were in Florida for about three weeks and stayed in multiple hotels. At many of the hotels the lifts were not working. At one of the places, the repairman tried to fix it, told us it’d be fixed by the end of the week, but it wasn’t. Luckily, my parents are still able to get me in and out of the pool so I was able to swim; hotels, it’s not very safe. I think part of the problem is that the lifts don’t get used very often, so routine maintenance doesn’t happen. Perhaps a requirement of a monthly maintenance check would help with this.
In my opinion, hotel accessibility has a long way to go. I didn’t even discuss the many other accessibility issues the general public likely doesn’t even think twice about it. Things such as curb cutouts, automatic doors, accessible counters, and wide doorways (just to name a few) are other things people with physical limitations have to consider when looking at hotels. It’s getting better, but there’s definitely room for improvement!