By Stacy Ellingen, 2017-09-11
Lately, it seems like all of the news coverage I’ve seen has been about the catastrophic storms that are happening around the world. Back to back major hurricanes in the south, wildfires in the west, earthquakes in Mexico… it seems endless. It’s true—disasters like these bring out the best in humanity. The stories of survival and of people helping one another are truly amazing. Having said that though, thousands of people’s lives have been turned upside-down. Watching all of this has really made me think about what extra steps people with disabilities have to take when Mother Nature throws curve balls.
I’ve seen a couple of different posts on social media about extra precautions people with disabilities need to take when major storms hit. Of course, needs widely vary depending on individual circumstances, but it’s recommended that everyone—especially those with disabilities—have a plan. Obviously, it’s important to have things like extra food, water, and batteries on hand, but it’s often critical for people with disabilities to have items like extra generators and extra medication ready. For people who rely on ventilators, backup generators are a must.
People who depend on others to help with personal cares needs have additional worries. What if your care assistants can’t get to you? How will you survive if nobody can get to you? The answer to these questions again depend on individual situations, but it’s important that people have a backup plan in place. People with mobility issues also need to think about how they would physically evacuate or take shelter if a major storm were to come. It’s a lot to think about, but it’s so important to have a plan in place.
In Wisconsin, it’s very rare that we get a real catastrophic storm. It seems like every few years a part of the state gets hammered with a huge blizzard or a major thunderstorm/tornado. While these storms aren’t usually too major, often times, they can cause some major obstacles for people with disabilities. Personally, I think winter is the worst. Between the bitter cold temps and the snow, I find it challenging to get out. I don’t have this problem anymore, but when I was at UW-Whitewater, I never wore a coat or gloves—even in the dead of winter. Yes, people thought I was crazy, but I didn’t have a way to bundle/unbundle when I got to class and home. I hate being hot, so I wasn’t going to sweat to death waiting for my next care shift. I usually got rides to/from class, but, admittedly, it wasn’t very smart. Snow brings another whole set of challenges for people who use wheelchairs. Sidewalks, curb cutouts, and ramps are often not cleared in a timely manner. Depending on how much snow there is, it can be nearly impossible to get anywhere.
Summer thunderstorms and tornadoes can bring on obstacles as well. Many people with disabilities rely heavily on electricity. Whether it’s charging a power scooter, charging a communication device, or using it to keep a ventilator running, electricity is crucial for sustaining life for people who have disabilities and illnesses. For me, when the power goes out, the first thing I worry about is my door to my apartment. It’s an electronic door, so when the power goes out, I can’t open the door to let my staff in (I have a clicker on my chair that I push to open the locked door). I do have a keybox outside of my apartment in case I’m unable to let people in, but it’s a matter of getting ahold of the person who is coming ahead of time, so they know what to do.
Tornado warnings are another interesting event when you have physical limitations. Fortunately, there haven’t been too many tornado warnings since I’ve been living in my apartment. There isn’t a basement where I live, so when there’s a tornado, I just go in the innermost room in my place which happens to be the bathroom. If something were to really happen where I needed help, I always have my phone on my chair. Another thing I have to worry about is when the weather gets bad (both in winter and summer), is whether people going to be able to get to my place to my help me. Fortunately, I’ve never had somebody not be able to get to me due to weather conditions. People have been really late because of the weather, but they eventually did make it. If things were to get really bad where it was going to be really dangerous for people to travel, I’d probably make arrangements beforehand to either have somebody stay with me or to stay with someone so I could get the help I needed.
Major storms can cause havoc for everyone; people with disabilities often just have some extra things to figure out. Planning and acting ahead of time can definitely help. It’s known how unpredictable Mother Nature can be; it’s best to have an action plan in place!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Stacy’s Journal: The 27th Anniversary of the Americans with Disabilities Act: How Far We’ve Come, yet More Work is Needed
By Stacy Ellingen, 2017-08-07
Most people don’t think twice about stepping off a sidewalk curb or running up a flight of stairs to get to their favorite restaurant. People normally don’t think about things like making calls to companies or being able to use public transportation either. Tasks such as these seem simple to most Americans. However, for people who have disabilities, being able to accomplish these things is a sign of major progress.
July marked the 27th anniversary of the Americans with Disabilities Act (ADA). The Act which became law in 1990 which is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. Some of the things it does include: it ensures that people with disabilities have the same employment opportunities and benefits that those without disabilities have and that employers provide reasonable accommodations for employees with disabilities, it requires that all public programs, places, and events are accessible to those who have disabilities, and it prohibits places of public accommodation (hotels, restaurants, stores, doctor’s offices, etc) from discriminating against people with disabilities. In addition, the law requires telephone and Internet companies to provide a nationwide system of interstate and intrastate telecommunications relay services that allows individuals with hearing and speech disabilities to communicate over the telephone. Among many other things, it also requires that public transportation be accessible to everyone.
Another significant law for people with disabilities was also redone and renamed in 1990. Previously known as the Education for All Handicapped Children Act (until 1990), the Individuals with Disabilities Education Act (IDEA) is a piece of legislation that ensures students with a disability are provided with Free Appropriate Public Education that is tailored to their individual needs. In short, the goal of IDEA is to provide children with disabilities the same opportunity for education as those students who do not have a disability. Some of the elements it includes are Individualized Education Plans (IEPs), Least Restrictive Environment, and Transition Services. Among others, these components allow students with disabilities to receive education just like their peers do. Public schools have to provide support and services to students with disabilities to meet their educational needs. Today, more than half of children with disabilities are in general education classrooms for most of the school day.
Fortunately, for me, I was born at a pretty opportune time as far as accessibility is concerned. I was just five years old when the ADA took effect, so I really don’t have much recollection of what things were like previously. Same goes for the IDEA. The first version of it took effective in 1975, but I think students with disabilities were still pretty segregated back then. It disheartens me to think that there were so many people with disabilities that were left behind before these laws took effect. Society lost out on millions of Americans with great potential. It truly breaks my heart to think about all of the children who were institutionalized all of their lives just because they had some sort of a disability. Children weren’t the only ones effected either. Millions of adults with disabilities lost out on the opportunity to lead successful and productive lives because support wasn’t available.
Personally, I’ve greatly benefited from the IDEA and the ADA. Thanks to the IDEA, starting in Kindergarten, I was able receive the services and support I needed to be able to be in all regular education classes with my peers. I was then able to receive vocational rehabilitation services which provided me with the support I needed to earn a college degree and find employment. The ADA allows me to be able to go almost everywhere I want/need to go. It also protects me from getting discriminated against because of my disability.
Having said that, I believe that there’s a lot that should be done with the ADA. Under the law, when businesses add on or remodel, they have to make the entire building accessible; however, as I recently found out, there are some stipulations to the rule. A popular restaurant in my hometown recently added a rooftop deck. I was excited because people were saying how cool it was; I figured that since it was an add-on they had to have put in an elevator to make it accessible. Unfortunately, that wasn’t the case. Since they serve the same food and “have the same décor” inside the restaurant (which is accessible), they don’t have to make the upper deck accessible. To me, that’s unfair. A rooftop deck obviously has a different atmosphere than an inside of a restaurant. Another thing that really irritates me is that many older businesses choose not to remodel or add-on just because it’s too expensive to bring the building up to code. While I understand it from the economic standpoint, I also believe it’s time to put some time stipulations on those businesses. Airline regulations are another topic that should be looked at and improved. Everything from check-in desks, to security, to plane accessibility could vastly be improved in my opinion.
So, while laws such as the Americans with Disabilities Act and Individuals with Disabilities Education Act have immensely improved lives for people with disabilities, there is a lot that still needs to be done. A lot of progress has been made in the last 50 years; I’m looking forward to seeing what will be done in the next 50 years!
***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, 2017-07-10
Whether it’s going to the store to get milk, going to work, going to a doctor apportionment, or meeting friends for dinner, most people get out of their house on a daily basis. It’s the natural thing to do. For many people with disabilities, going out isn’t always easy. In fact, it’s often one of the biggest barriers.
Growing up, I was blessed that my family was able to take me places just like any kid. As I’ve written about in past entries, I’ve probably traveled to more places than most people my age. Before getting our first wheelchair accessible van, my parents took me places in a car and took either my stroller or manual wheelchair. I was young enough that the independence factor (when I use my manual chair as opposed to my power chair, I have to depend on others to move me around) didn’t really matter. When my parents got their first wheelchair accessible van, I remember thinking it was so cool being able to go places in my power chair. It brought a whole new meaning of independence to me. As I got older, we used the car and my manual chair less and less. My independence became more prevalent, so the van became my main means of transportation. Now, we just occasionally use my manual chair for things such as visiting relatives and vacations where we fly.
When I started at UW-Whitewater, I found a whole new means of transportation—my wheelchair! Yes, UW-Whitewater had a service that gave students with disabilities rides around campus. In most cases, I think the Department of Vocational Rehabilitation (DVR) funds this for students who need it. For a few years I was there, they also offered off-campus rides. Students paid extra for this service and vans would take people to places such as stores and restaurants. I used the service for a couple of years, but the service hours weren’t very convenient and it just wasn’t worth it. I think they have stopped offering off campus rides now actually. I used the on-campus ride service pretty regularly, but I also just went around in my chair quite a bit. Whitewater is a pretty small town and the campus is small, so I could go anywhere in my chair (as long as the weather was decent). It was awesome! Whitewater also had a decent accessible cab service that my friends and I frequently used. I had my manual chair down there as well, so oftentimes, my friends would just put me in their cars, and we’d go places.
It wasn’t until after college that I realized just how big of a barrier transportation was going to be in my life. My parents live outside of the city, so public transportation wasn’t an option. I couldn’t cruise very far in my chair either. I solely relied on my parents to take me everywhere. That was a huge adjustment from college. I had to schedule everything around their availability.
When I moved to Oshkosh, things got a little better, but not by much. My apartment is in the city, but no stores or restaurants are real close by. I used to go for long cruises all around town in summer. However, unfortunately, that came to an end two summers ago when my chair quit on my way back from the park. My whole family was out of state at the time, and it was a huge mess. Fortunately, some nice people stopped to help me and they were able to figure out to call my care agency I had at the time (I’m nonverbal and of course didn’t have my communication device with me, so that added to the circus). Needless to say, I don’t venture further than around the block by myself anymore!
Oshkosh does have accessible public transportation available. Their bus system is accessible. A few years ago when I was working with DVR to try to find employment, they actually had me do bus training to see if it’d be a reliable source of transportation for me. Unfortunately, due to many factors, it didn’t work out too well. The closet bus stop is about two blocks away from my apartment which isn’t far, but if it’s raining or snowing, I have no way to protect my electronic equipment. Plus, the bus schedule is very confusing, and it’d be nearly impossible to coordinate it with my care schedule. There are two or three accessible cab companies in Oshkosh. One is connected with the city bus system; that’s the one I use to go grocery shopping every week. I have a standing ride to and from the store every week, so I don’t have to have someone call in each time. They pick up and drop off my staff and I right in my apartment driveway. It works okay. Again, timing is an issue. It has improved recently, but there have been times where we’ve waited well over an hour for a scheduled ride. This wouldn’t be a big deal except that I only have staff for a certain amount of time. I also wish there was some way that I could setup rides and ride the cab independently. Currently, the only way to schedule a ride is over the phone. Eventually, with technology advancing, I’m hoping that will change. They also only take exact cash from people like me (I’m not on the MCO so I don’t get ride tickets). I’m physically unable to hand the driver money, and I don’t feel comfortable having them root through my stuff to get it. I wish that they had some sort of a pass or something I could buy. Maybe in time they will.
Cabs are affordable for in-city daytime trips; however, if you want to leave the city limits or go somewhere outside of normal business hours, the prices skyrocket! I live less than 40 miles from my parents, and if I wanted to take a cab to their house, it’d cost me over $250 one way! I think that’s insane! For now, thankfully, my parents are able to cart me around to most of the events I want to go to.
Relying on others for transportation definitely puts limits on a person’s life. Not being able to go where and when you want can be very frustrating. Self-driving vehicles are becoming more and more advanced. I don’t know if it’ll be in my lifetime, but someday there will be self-driving accessible vehicles widely available (and affordable). All a person will have to do is program where he/she wants to go using a phone or computer and then the vehicle will automatically go there. How incredibly amazing will that be? It’s hard to even fathom, but it will be life changing for many of us with disabilities. I can only hope I see that day come!
***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, 2017-06-15
Ever want just one day where everything just goes perfect? I think everybody does. For me, that day was my sister’s wedding day. She probably didn’t realize this, but I had been thinking about the day for years—even before she met her now husband. I knew that it was likely that she’d fall in love and get married before me. Of course, it wasn’t easy for me to emotionally accept, but I had it in my mind for years that I was going to do everything in my power to make her wedding day all about her. I was determined to make it the perfect day for her.
The wedding planning started last summer. They picked a church and venue in the Madison area where they live. Of course, my sister made sure everything was wheelchair accessible. We spent a day in August shopping for her wedding dress with his sister and mom. Admittedly, that wasn’t the easiest thing for me to do. Watching my little sister try on wedding dresses with our mom and her future mother-in-law and sister-in-law brought many thoughts to my mind. I wondered if I’d ever get the chance to do that. However, I tried the best I could to put my emotions aside, and be there for my sister.
Last fall, she asked me to be her maid of honor. I kind of figured I’d be in the wedding (because I’m her only sister and we’re pretty close), but I wasn’t sure I would be the maid of honor because physically I wouldn’t be able to help her much on her special day. True to her fashion, she didn’t let my limitations make that determination though. I was her sister; therefore, I was going to be the maid of honor in her wedding.
Since I do some freelance graphic design, as part of their wedding gift, I designed their save-the-date cards for them. As maid of honor, you usually throw the bride a wedding shower. I obviously couldn’t do that physically myself, so my aunt and I organized one at my parents’ house. My aunt took care of all of the food, and I was in charge of the invitations, decorations, and games. My mom and I also went to a shower for Steph hosted by his sister. Again, those selfish thoughts crept into my head while attending the showers, but I did my best to push them aside.
Originally, for the wedding weekend, I had one of my personal care assistants setup to come to Madison to help me. I thought that it’d be perfect—that way my parents wouldn’t have to worry about doing my cares; they could have one weekend where they focused solely on my sister. That was truly my hope. Unfortunately, that didn’t happen. My care worker backed out about two months before the wedding, and I wasn’t able to find anybody else for the entire weekend. Doing what my family does best, we adapted. I found a friend who lived in the area to feed me at the reception, and my parents would do the rest of my cares that weekend.
The festivities started the first Friday in June. My parents and I actually went down on Thursday to start getting things setup. We had some time to explore Madison and had some great family time. Friday, before the rehearsal, the ladies went to the Capitol and did State Street. I loved it because I had never been down there before. The other two bridesmaids were so nice and accepting. It was a great time. The rehearsal and rehearsal dinner were very nice. I was able to fight off my mind from wandering pretty well, and I was all set for Saturday.
Saturday morning, my mom and I got our hair done first, and then we waited while the others got their hair done. I had gotten dressed early that morning because it was just easier. The other girls got dressed at the nature center where the pictures were taken. Everything was going great until we started pictures outside. Very suddenly I knew something wasn’t right. I started having severe stomach pain and was very light-headed. My sister knew something was wrong right away. They brought me back inside and laid me down. They called my parents to come get me. They took me to the church where I laid down for a half hour before the ceremony. By this point, Steph was ready to cancel the whole thing and rush me to the hospital. There was no way I was going to let that happen. It started five minutes late and they skipped a song to shorten it, but the ceremony went on. I was able to hold it together through it. All I could do was keep apologizing to my sister. At the reception, I spent most of the time in the back room because I was so in much pain. I’d try to go out and be social for about ten minutes at a time, but then the pain was just too bad that I had to go back and tilt back in my chair. My poor parents spent most of the night helping me instead of enjoying the festivities. I was able to give my speech using my iPad which was very important to me. Then, there was an hour or so where I felt great. I was able to dance and enjoy the family who was there, but, unfortunately, the pain returned.
Finally, around 9:30, we decided I couldn’t wait any longer—I needed to go in. My poor sister was calling hospitals to see if they accepted my insurance on her wedding night. My parents and I didn’t even say goodbye to people. We just ran out. Steph helped load me into the van and my parents drove me to UW Madison Hospital. We spent 15 hours in the emergency room and I was eventually admitted for a night. It ended up being another gastrointestinal issue likely due to having cerebral palsy.
Words will never be able to describe how terrible I feel that this happened on my sister’s wedding day. I feel like I was such a burden. Even though, people keep telling me it wasn’t my fault, I will never be able to forgive myself. It was supposed to her big day and I will always feel like I ruined it. I keep apologizing to Steph and my parents. They keep reminding that I did all the important parts, but I think I’ll always carry guilt about it. I think I even feel worse about it because I was trying so hard to make the day perfect for her.
I don’t ask “why me” very often, but, admittedly, under these circumstances, I certainly did. Life just isn’t fair sometimes. I’m beyond blessed to have great parents, a great sister, and now a great brother-in-law who will never blame me for this fiasco. I guess that defines the true meaning of family, doesn’t it?
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors
By Stacy Ellingen, 2017-05-05
Whether it’s a fancy restaurant or a fast food restaurant, going out to eat is a common activity for most people. Eating is a necessity of human survival, but it’s also a very social activity. No matter what kind of event people attend, it’s very common for eating and drinking to be involved.
For people with some disabilities, eating can pose a variety of challenges. Depending on the circumstances, some people cannot eat orally and have to be tube fed. Fortunately, I’m able to eat orally. In fact, my friends and family will say that I love to eat! People are surprised how much I eat because I don’t gain much weight. The reason why is because my body never stops moving unless I’m sleeping. I do need assistance eating though. I’m not able to prepare meals or feed myself.
Needing assistance eating has its challenges as well. One of them being that unlike most people I can’t just grab a snack whenever I want. When I have care shifts, I need to make sure I get enough to eat and drink to last me until the next attendant comes.
There are a few finger foods I can eat on my own, but because of my poor fine motor skills, I often drop things on either myself or on the floor. Sometimes, I can handle things such as string cheese, beef jerky sticks, and hard candy myself. Though, again, those things have to be unwrapped and placed where I can easily grab them. Recently, because of staffing issues, there have been a few times where I’ve fed myself breakfast. The meal consisted of string cheese, fruit snacks, and pretzels. Not the most nutritious breakfast, but those are things that I kind of eat myself. Due to an aide calling in sick late the night before and nobody picking up the morning shift (I was stubborn and didn’t want my parents to come up to help), I slept in my wheelchair one night. The night before I had my night aide put finger food on my table for the morning, but I also had her put my morning pills on the table. I also had her duct tape a cup of water to the table. Now, people have to understand that I take five small pills, and having pretty limited fine motor ability, picking up these small pills and getting them into my mouth takes talent. Somehow, that morning, I was able to get all five pills in my mouth without dropping a single one! I think it was luck more than anything; I probably couldn’t do it again.
Because cerebral palsy affects all of my muscles in my entire body, muscles in my mouth are affected too. Sometimes, I uncontrollably roll food off my tongue. Food often gets on my clothes. When I’m at home, I usually wear a towel on my shirt when I eat or drink anything. When I’m out to at a restaurant or in public, I try using napkins instead because it’s more acceptable.
Having to be fed has some psychological effects as well. My friends and family don’t have a problem feeding me in public though. Until a few years ago, my friends and I would go out to eat all the time and they’d feed me. Now, since most of my friends have significant others and families, it’s a little different. I usually have my mom come to feed me because it’s just different. I’m sure they would have no problem still feeding me, but I feel weird having them assist me when they have their own children to worry about. It’s just one of those awkward situations.
When I go out to eat, people do stare. It does make me self-conscious, but I try to not let it bug me. It’s just one of those things that I kind of ignore. Obviously, some foods are messier to eat than others. Normally, I don’t take that into consideration when choosing what I want to eat simply because I figure I should be able to eat what I want.
Healthwise, up until a few years ago, I had no food restrictions. When I started having serious gastrointestinal Issues a few years ago, I had to adjust my diet. I have acid reflux (which is common among people with cp), so I have to avoid acidic foods. I also don’t eat fast food anymore because we It doesn’t sit well with me. Certain textures of food do mess with my gag reflux. For years, I thought it was just something with me, but I’ve learned others with CP have the same problem. Things with certain textures, such as pies, yogurt, and filled donuts, I can’t eat because those kind of things make my gag reflux bad.
Many people don’t even think twice about grabbing a snack from the fridge. For many people with disabilities and health conditions, mealtime isn’t always an easy time, but since eating is an essential part of life, we do what we have to!
By Stacy Ellingen, 2017-04-11
For most women, fashion is important at least to some extent. Whether it’s their wardrobe, hairstyle, jewelry, shoes, or another facet of beauty, ladies enjoy getting glammed up every once in a while. Women with disabilities are no different. We have the desire to look pretty too. For those of us who have physical disabilities, looking fashionable (or the way we want) comes with many obstacles that most people never even think about.
Fortunately, I consider myself a pretty laid back girl in terms of fashion. Unless I’m going out with family or friends, you’ll normally find me in jeans and a sweatshirt or sweats. Those are the easiest kinds of outfits to wear. When buying clothes, I have to be conscious of things that don’t even cross most people’s minds. Things such as color, style, length, size, and cut all need more consideration when I buy clothes.
Since I’m in a wheelchair, I have to be very conscientious of how shirts and dresses are cut. Because of how I sit, certain cuts are way too revealing. Low cut shirts and strapless dresses don’t work for me. Certain styles of tops are really difficult to get into because my arms often don’t bend very easily. When buying pants, I have to make sure they are not too long because otherwise I slip on them while transferring. I also have to make sure that there aren’t too many bulky buttons or rhinestones by the waist of the pants because my seatbelt on my wheelchair presses on them and irritates my skin. Length of dresses is something else I need to be aware of. Since I sit most of the time, many dresses are often too short; on the other hand, I can’t wear floor length dresses either because they would get caught in the tires of my chair. It’s a balancing act.
Color of clothes—especially tops—is another thing that I need to be conscientious of. Due to cerebral palsy, I drool. Certain colors of shirts and dresses show drool more. Of course, I can’t totally avoid wearing those colors, but I do make an effort not to wear them for special occasions. In fact, a good example of this is when my sister first started looking at colors for bridesmaid dresses for her wedding, she asked for my opinion between two colors. Of course I said it was up to her (and I’d make anything work), but I reminded her that one of the colors would show my drool less. I don’t think it was just because of that, but she did end up choosing that color.
Shoes present another whole set of issues. Most of the time, I wear tennis shoes because they’re the most comfortable and the easiest type of shoe to stand in. It’s challenging to find even tennis shoes that work for me. I need shoes that have good grip the bottom of them because otherwise I slide all over during transfers and can’t push myself in to my chair. It’s getting harder and harder to find ones that have good grip. I don’t wear orthotics anymore, but I did when I was younger. When I wore those, I needed to wear high-tops tennis shoes with them. Finding high-top shoes for little girls was nearly impossible. We often ended up buying boys shoes for me. It’s very rare for me to wear anything other than tennis shoes. Finding dress shoes for me isn’t easy either. I have to have something that either ties or has an adjustable strap otherwise it won’t stay on. Unlike for most ladies, shoe shopping isn’t the most enjoyable thing for me. I’d love to be able to wear all of the cute shoes that are out there, but that’s just not a feasible option.
My wardrobe isn’t the only fashion item my disability effects. When choosing hairstyles, I have to think about what would be easy for my care workers to do and what would stay out of my face. My family knows I’m an extremist when it comes to hairstyles. I like it either very long or very short. Due to my muscle movements, many hairdos tend to fall out. When I’m growing it out, we try clipping it back several ways until it’s long enough to be in a ponytail. Unfortunately, like most girls, I find growing it out to be a pain. Between my body movements and hitting my head on the headrest of my chair, I feel like my hair is never really perfect, but I think every girl feels that way!
Things like makeup and jewelry present similar challenges. I don’t wear makeup very often, but when I do, I have to have someone else apply it. Again, with my uncontrollable muscle movements, this can be hard. Eye shadow, blush, and a little mascara (on the top eyelashes only) are about all I ever wear. I also only occasionally wear jewelry. Necklaces and earrings are okay most of the time, but bracelets and rings can be hard to wear because my hands are always moving and bracelets and rings often get caught on my chair and keyboard.
Like I said, I don’t dress up very often. Part of is due to my personality, but I think part of it has to do with my disability. Would I dress up more often if I didn’t have limitations? It’s very likely I would, but it’s also likely I’d have a completely different lifestyle if that were the case. Fashion has never been a top priority in my life. I always try to look presentable when I’m out in public; however, I have never been to obsess over fashion!
By Stacy Ellingen, 2017-03-06
No matter how old you are, no matter whether you’re single or married with kids, or no matter what your economic status is, every human being depends on others to some extent. People may not like to admit it, but nobody is really ever totally independent. Obviously, there’s a broad range of dependency. Everyone likes to be viewed as being as independent as possible. The notion of independence comes with a certain level of clout. When people accomplish a task independently, it’s viewed as a positive thing. For many people with disabilities, being able to do certain everyday things (that others often take for granted) independently is often a huge accomplishment.
As I’ve shared in past entries, I need assistance with all of my basic needs. Someone has to help me roll out of bed in the morning, use the restroom multiple times throughout the day, get showered and dressed, prepare and eat all of my meals, and put me to bed at night. To most people, that sounds the complete opposite of the definition of independent. Yet, most people who know me say I’m a pretty independent person. Yes, I need physical assistance with basic needs, but I’m able to do a lot of tasks despite my limitations.
I learned a whole new level of independence last summer when I switched to Self-Directed Personal Care (SDPC) through IRIS. I’ve been hiring and scheduling my own staff for over eight months now, and it has been quite a learning experience to say the least. Previously, I had always had home care agencies that would hire and schedule all of the workers. As I explained in a previous entry, the last agency I had was a complete nightmare. I was leery about taking on the responsibility, but I really didn’t have a choice.
To find workers, I posted ads on sites such as Facebook and indeed.com. People would apply via email, and then because I’m non-verbal my mom would call them and interview/tell them about me. If the person sounded legit and interested, I’d email them the packet of forms to fill out (I downloaded the forms and filled out as much as I could). Once the person completed the paperwork, they’d email me and we’d set up a time for them to drop off the paperwork at my apartment. I made sure everything was filled out correctly, and then I’d email my IRIS consultant to setup a time for her to pick up the packet. As I mentioned in my last entry, it took quite awhile for some of the paperwork to process, so I had to stay at my parents for close to a month until enough people were approved.
I created a Facebook group for my staff where I post and organize everything. I currently have 12 approved staff besides my parents. I create a monthly schedule based on the availability the staff gives me. Eight months in, and I’ve already had some pretty interesting things happen. When I first started, I had three or four people turn in paperwork and get approved to work, but then decide they don’t want the job. That’s incredibly frustrating! I had a person who had multiple shifts give less than a four hour notice of quitting.
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. I haven’t found a good solution to this. Fortunately, I’ve been blessed with great parents who have come to my rescue many times. I feel absolutely horrible that I have to depend on them. Since I’ve switched to SDPC, they don’t feel comfortable traveling out-of-state because they fear I’ll need something. That’s not right, but I don’t know how to fix it.
Call-in and no shows aren’t the only issues I’ve had. I debated whether or not to share this story, but I think it shows the reality of personal care for people. One morning in December, I had a new girl scheduled to get me up. She had read my care instructions (I have step-by-step instructions typed out for each shift) and she had observed one shift. The first part of the shift went really well. The problem came when I was transferring off of the toilet into my chair. When I sat down, I wasn’t far enough on my seat and I slid onto the tile floor. Luckily, I wasn’t hurt, but the girl couldn’t get me off the floor. She was freaking out and didn’t know what to do. I gestured her to grab my cell phone off of my chair and got her call my dad. My dad said he’d come help, but it’d be close to an hour before got there (my parents live 45 minutes away). After he hangs up, the girl starts crying and runs out of my apartment leaving me lay on the bathroom floor! My dad knew something was really wrong when he rang the doorbell and nobody answered (thankfully he has a key). I’m just thankful she called my dad before running out. I wasn’t even upset that I was on the floor. Accidents happen. It was the fact that she left me alone on the floor that upset me. Admittedly, laying on the floor for 45 minutes waiting for my dad, I felt pretty dependent and useless. Needless to say, the girl never came back, and now every new staff I have has to at least one transfer with me when someone is watching before doing it on their own.
With SDPC, I also have to make all of my staff have their hours in and approve them. When you have nearly 50 hours of care per week and 14 staff, it’s quite a chore. I have to make sure every shift in the two-week period is entered correctly and is coded right. If something isn’t correct, I have to contact the staff and have them re-enter it. When people have issues logging into the portal to submit their hours, I have to help them solve the problem as well.
With all that said, being on SDPC has made as independent as I possibly can be. As stressful as it is, I’m much happier and safer this way. While I know I likely will have to go back to having an agency at some point in my life, this is the best choice for me right now.
I realize I’ll always be more dependent on others than most people are, but I’ve accepted that. Given the severity of my physical limitations, I feel like I do pretty well. We all need help to some extent, but, like everyone else, I will always strive to be as independent as possible!
By Stacy Ellingen, 2017-02-06
As the saying goes, “patience is a virtue.” Whether it’s waiting for a stop light to change or waiting for your first child to be born, waiting is a part of our everyday lives. Yes, some people are better at it than others, but I think everyone is impatient to some extent. I don’t have evidence to prove it, but, based on my experience, I certainly would bet people with disabilities wait more than most. I often tell people that I feel like I spend the majority of my life waiting.
As I’ve explained in past entries, because I need assistance with most of my basic needs, I live a very scheduled life. Everything from the time I get up in the morning, to the times I eat and use the restroom throughout the day, to the time I go to bed at night, everything is scheduled for a specific time. If I need to use the restroom or am hungry or thirsty, I wait for my next assistant to come. If someone is late or doesn’t show, I have to wait to get my basic needs taken care of. Countless times, I’ve been stuck in bed for several hours because someone didn’t show. When that happens, I text people, wait for replies, and then wait for someone to get here to assist me.
Personal assistance isn’t the only thing I find myself waiting on. Since I’m not able to verbally communicate using the phone, I rely heavily on email. While email is great, it’s not an immediate form of communication. People don’t immediately respond to emails. Admittedly, very frequently, I get really frustrated when people take several days or even weeks to respond to emails. It’s especially irritating when I’m trying to get answers to questions or obtain information about something important. It’s difficult, but I try to remind myself that most people aren’t glued to the computer everyday like I am!
People with disabilities also have to be patient when they’re on the so called “system.” Regardless of which government program it is, it often seems like it takes ages to get anything approved or done. Whether it’s getting a piece of medical equipment approved or getting a personal care worker’s background check done, it takes a long time. Some of the things that people have to wait on are often essential to them being able to live their life to the fullest. When I switched to Self-Directed Personal Care through IRIS last summer, I had to live with my parents for close to a month while I waited for enough workers to get approved so that I could live independently in my apartment again. Some of the background checks took nearly two months to complete—it was unbelievable! That’s just one of the many examples I’ve had where I’ve had to wait for the government to process paperwork.
Undoubtedly, almost everyone finds waiting somewhat hard. Having a “go-getter” personality, I find waiting for certain things incredibly difficult. I’ve realized, though, that having a disability has made me more patient than many people. I have no choice, but to be patient in many situations.
What do you find it hard to wait for?