When was the last time you thought about how much time it takes you to do a simple task? Like putting a Cheeto in your mouth? Or putting your clothes on for the day? Most people don’t even think about how long it takes them complete routine simple tasks. Simple tasks that humans do every day become second nature. It’s often only thought about when these routine tasks take longer to complete for whatever reason. When something takes longer to do than normal, frustration often sets in. For some people with disabilities, basic tasks often take longer to complete. It can vary day to day which creates more frustration. As I’ve said before, learning patience is a must when living with certain disabilities or health conditions.

Cerebral Palsy is considered non-degenerative which means that the actual condition does not get worse over time. As I’ve explained in previous entries, though, many people have found that secondary effects of the condition often appear as people age. Many of my friends with CP have found this to be true. The most frustrating thing is that none of us were expecting these issues. As kids, our parents weren’t told to expect more problems as we age.

I recently had another emergency gastrointestinal surgery. I’m fortunate to be able to know what’s happening and that I need to go to the emergency room. This was the fourth time it has happened in less than nine years. I spent a week in the hospital recovering and then another week or so at my parents. Fortunately, my parents were able to stay with me at the hospital to help with communication and cares. By now, we know the recovery routine pretty well.

However, this time has been a little different. My body hasn’t bounced back like it has in the past. While thankfully, the actual stomach issue has been resolved, my body is sort of playing games with me. My muscle spasticity has been way worse since the surgery. When my spasticity is really bad, my body freezes. I literally can’t move until the spasm passes, and this happens several times a day. We have no idea why suddenly it has increased. When it happens, it’s not only painful, but it’s also very frustrating. I have no idea when it’s going to happen. It has happened several times during meetings on Zoom. I just have to turn off my camera and do the best I can to continue to participate in the meeting. Thankfully, people who I work with are understanding and patient with me, but it’s incredibly frustrating.  

Due to this new issue, things also take me even longer to complete than before. I feed myself lunch everyday and I’ve noticed that it takes me much longer to eat than it once did. Same with typing--it’s taking me longer to accomplish things on the computer. My caregivers have noticed it too when they’re helping me with cares. When my muscles tense up, we have to stop what we’re doing and just wait. Fortunately, they’re all pretty patient and are good at taking the time I need.

I learned I need to have patience at an early age, but, admittedly, this has taken a toll on me mentally. Why is this happening to me? Will I ever catch a break? Is this my new normal? Questions such as these go through my head quite often lately. My poor mom gets the brunt of my frustration. We are working with doctors to try to figure out something that will help, but the truth is, there really isn’t a “cure all” for this. Unfortunately, it’s part of my condition and there are still many unknowns. At my post-op appointment, we questioned my surgeon about what could be done to prevent gastrointestinal issues from happening again. She told us that there is really nothing that can be done to prevent it. It’s just how my body is. She said that I have a “weird anatomy”,” and that there’s no way of knowing if/when it’ll happen again. Hearing that was discouraging. I told my mom, “I’ll probably end up dying from one of these gastrointestinal issues.” She didn’t know how to respond to that. She reminded me that it’s good that I’m able to tell when something is wrong and communicate that I need to go in. My surgeon emphasized that as well. Still, it’s a hard pill to swallow when your body is slowly declining at the age of 35, and there’s nothing you can do about it.

Let me be clear-- by no means am I looking for pity. I only share this to educate people. Obviously, I don’t hope anyone else is going through similar circumstances, but the reality is that people are. I want them to know that they’re not alone. May is Mental Health Awareness Month. It’s no secret that I’ve been in several “funks” from time to time. There are several different ways to deal with depression and anxiety. Some people see a therapist on a regular basis. Others take medication. Other people need in-patient treatment. There are several different options to help people deal with this. Personally, I use a combination of things. My mom is my sounding board. She is able to usually talk with me and get my mind in a better place. Sometimes, I talk with friends who I know have dealt with similar issues. Getting out and doing something social usually helps me a lot. I’m disclosing this in hopes of ending the stigma—several months ago, I talked to my doctor and started on a medication to kind of help me with anxiety and depression. I’m not proud to tell people that, but it’s life. I think it’s important to know that others need a little help. I finally got the courage to talk to my doctor after I talked with two of my friends who have similar issues. For me, the medication certainly doesn’t mask any of the thoughts or feelings I have, but I didn’t want it to. It does, however, seem to keep my mind a little bit calmer.

Mental Health is part of our overall well-being. Sometimes, life can be hard and unfair. We all have feelings of sadness and frustration sometimes. What’s important is how we deal with it. For me, when I’m having a rough time, my mom says, “remember, you’re doing the best you can.”  She’s right. I really encourage people who are having a hard time in any way to reach out to someone who can be trusted. It could be a neighbor, a friend, a coworker, a doctor… whoever that may be, share your feelings with them. It’s ok to ask for help.

***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.

“Sticks and stones may break my bones, but words will never hurt me.” Many people hear that saying in life. Is it true? Absolutely not. Words hurt. In today’s world, I wonder what would happen if words caused physical harm. I think we would have even more problems than we already do. Unfortunately, discrimination is part of life in the world we live in. I believe everyone gets discriminated against at some point in life—it’s just a fact. Obviously, there are lots of different types of discrimination. People with disabilities often feel more discriminated against than the average person.

“I used to take care of them,” a lady recently said to my parents while we were sitting by the pool in Florida. I was taken back by her comment. Them? Am I really a them? I know the lady likely didn’t mean to say it in a negative way, but it came off as if I was a part of some cult or something. I’m not a “them” just because I have some limitations. My mom went into her “Mama Bear” mode right away and started explaining all I’ve accomplished. This is a frequent occurrence when people make inappropriate comments or ask awkward questions about me. My parents don’t put up with rude people. When the lady left, I asked my mom, “am I really a them?” She and dad then went into their spiel about ignorant people. We’ve had this discussion a million times, but it doesn’t get old—it helps me realize that many people just don’t understand disabilities. In a way, talking about it with my friends and family (who obviously understand) helps me cope with the negativity.

I’ve written entries in the past about how people treat people with disabilities. People can be extremely rude. I’d like to think that they don’t realize they’re being hurtful when they say things, but sometimes, it’s hard to believe that. Thankfully, I was too young to remember this, but, when I was a kid and still in a stroller, a lady came up to my mom in a department store and asked her why she didn’t just let me die. Seriously? Who says that? I don’t even know how my mom responded, but I bet she said something to the effect that “I’m sorry you feel that way and I’m sorry Stacy heard you ask me that. We are extremely grateful that we have her.” My mom still brings it up every once in a while, so I know it hurt her.

As I get older, I find myself wondering if it will ever stop. Will my nephew have to respond to those inappropriate comments about me? How will he react? I know my sister, brother-in-law, parents, and I will try to help him understand that people will stare, point, and say things because I’m different. My hope is that he will understand and became another one of the people who help me advocate and respond.

As I’ve said before, kids are totally different. When they point, stare, and say things, they do it out of curiosity. They are trying to learn about differences. When I see a little kid pointing and asking questions or saying something, the adult with them often pulls her/him away and tries to hush the child. I don’t like this. Depending who I’m with at the time, I often try to interact with the kid. It’s so important to educate kids and let them ask the questions, so as they get older, they know how to interact with people who are different than them.

I believe people with disabilities also have to make a conscious effort to educate people. We can’t expect people not to react negatively if they don’t know how to appropriately interact with us. Of course, in a perfect world, people should not interact with people with disabilities any differently, but we know that this world is far from perfect. As a person with a disability, I feel I have a responsibility to educate people who don’t understand or know how to treat people with disabilities.

In today’s day in age, disability discrimination has been put on the back burner. With everything going on in the world, I believe there are many other pressing issues to tackle at the moment. That’s not to say that disability discrimination/equality isn’t important. It’s just the media has many more pressing issues to cover. I’ve only discussed verbal discrimination in this entry, but there are many other types of discrimination that people with disabilities face. Housing, financial, and employment discrimination are also very prevalent in the disability community.

Will there ever be a day when the pronoun “them” will be just associated with a group of friends and that’s the only meaning? Unfortunately, I don’t see that day coming anytime soon. It’d be a very boring world if everyone was exact same. We have to continue to make an effort to be vigilant and sensitive to differences. I challenge each of you to reach out to someone who is different than you this week. Take five minutes to talk to him/her and learn something about them. You never know—it could result in a lifetime friendship!

***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.

If you could meet one famous person, who would you want to meet? Questions like this are normally not asked to adults. It’s not a usual topic that’s brought up in everyday conversations. Meeting famous people isn’t something most adults care about. Of course, almost everyone has a person or two we would love to meet, but it’s not something we normally do. Often, meeting a famous person isn’t a high priority. Most people aren’t comfortable with being called out for doing something good. Often, people appreciate acknowledgement and praise, but we are uncomfortable with it. For people with disabilities or health conditions, many times, offering to meet a celebrity or being praised for something can be a unique experience.

In an entry I did a few years ago, I discussed my opinion about the whole inspiration controversy. In short, while many people with disabilities hate when the word “inspirational” is used to describe them, I personally don’t normally mind. Don’t get me wrong, I don’t like being praised or called out for something I do, but I hope that I can be an inspiration to others. I believe part of my role as a person with a significant disability is to educate and show others what is possible.

I’ve seen many news stories about people with disabilities or health conditions getting to meet celebrities or getting to do something special as a nice gesture of an organization or person. While this is totally awesome for some people, I personally don’t like the idea of this for someone like myself.  Why would I deserve something like that? Just because I have some limitations and have a different life than most? To me, that is not a good reason. I understand and fully support things like Make-a-Wish for kids with terminal illnesses. Kids with terminal medical conditions unfortunately don’t have much to look forward to. If their one dream of meeting someone famous or going on that special trip somewhere can be fulfilled, by all means, it should. However, I don’t believe that those of us who have physical disabilities (that aren’t considered progressive or terminal) should get that type of special treatment.

I was talking with my mom a few weeks ago about this, and I was telling her how a recent article I read about a man with the same condition I have has special relationships with a few popular country singers. I told her how I thought that wasn’t right. She then brought up something I never thought about. She said maybe that’s another form of advocacy for some people. Maybe some people like sharing their story with famous people and need that recognition to feel worthy. For me, personally, I feel like that is completely asking for pity. For full disclosure, I’ve done meet and greets after a couple of country concerts I attended with my friends, but that’s purely because we were a couple of giddy girls wanting to get autographs and snap a picture with a singer we loved. It lasted about 30 seconds and nothing was even mentioned about me personally. That’s the only way I will ever “meet” a celebrity. I have also met and shared my story with legislators, but when I do that, I’m advocating for better funding for the services I need to receive in order to help me live independently.

I’ve been told that some people probably think some of the advocacy work I do is asking for pity or drawing the wrong type of attention that I want. When I write these articles and do the YouTube videos, I hope I educate people about what life is like for people with disabilities and what we can do. I never ever do this to invoke pity. By doing what I do, am I bragging or showing off? Honestly, I can understand why some people may think that way, and I don’t think they’re completely wrong. I’m proud of where I am and what I’ve accomplished given the curves life has thrown me. I think people have to realize that people with disabilities may never be able to accomplish those big “life milestones” that most of our peers will be able to, so, for me at least, when I share personal experiences about living with disability, many times when I post whatever it is on my social media, I think of it as another milestone or life accomplishment. Is it the same as one of my friends posting about a new house or something cute or funny that their child just did? Of course not, but that’s ok. I still appreciate getting praise and acknowledgement from it.

I’ve been fortunate to have received some awards and recognition various things mostly related to the advocacy I have done. A couple of examples come to mind. The first was back in my senior year of high school. At the end of the year, I was invited to the senior sports awards banquet. Now, I obviously wasn’t an athlete, so I had no reason to be invited. I was told that the athletes had voted me to get the sportsmanship award (I attended almost every football and basketball game during high school). I also received a special sportsmanship scholarship at the academic awards night. Were both of those due to having a disability? In a roundabout way, probably, but again, it was because of something I was able to do despite my circumstances. I’m sure some people in my class felt like I was given undeserved recognition, but, for me, it was a huge honor.

Another thing that comes to mind is when my coworker and I received the “You Make a Difference” award for the articles we wrote in the local newspaper. This was when I was in college, and another lady and I had a weekly column we switched off writing articles for. It was all about experiencing life living a disability. The lady’s son had a disability, so she wrote from her perspective, and I wrote about my experiences. It was all voluntary, but the exposure was incredible for us. We ended up getting an award in Madison. I don’t remember where it was even through, but it was a very special honor. Again, it was because of my willingness and ability to share personal experiences about my disability that this happened.

The last example is when I received the Self-Advocate Diehard Award at the 2019 Self-Determination Conference. I’m not one to boast about myself, so I haven’t mentioned it in any journal entries until now. I was incredibly surprised and honored to receive this. I had done quite a bit of work with the Self-Determination YouTube channel and other things that year, so it was very humbling to be recognized. That too, was directly related to having a disability.

While it’s often hard or uncomfortable to accept, everyone appreciates some type of recognition or praise to some extent. There are so many different views related to this topic. There isn’t a right or wrong--it’s really about individual preference. People with disabilities just have some extra things to consider when receiving acknowledgement.

***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.

As the saying goes, “you don’t always get what you wish for.”  It’s common to hear people say “make a wish,” after singing the Happy Birthday song. It’s also common to ask people to make a wish list for special occasions such as Christmas or birthdays.  Regardless of the situation, when people are asked to make a wish as adults, it often provokes some thoughts. What do I wish for? Is that wish even possible? What would happen if it came true? People wish for all sorts of different things. Little kids usually wish for toys they want. As adults, we often wish for things that are not tangible. People with disabilities are no different. While our wishes may be a little different than most, we still have fantasy dreams and seemingly unattainable wishes.

As a kid in third grade, I vividly remember, as an assignment, we had to write down two wishes—one realistic and the other one probably unrealistic. We had read a story about wishes or something, and the teacher was trying to get us to think about realistic vs. fantasy or unrealistic. For my realistic wish or goal, I wrote down I wished I could eat a whole pizza (I have no idea where that came from that day, but that’s what I wrote down). For my other wish, I wrote that I wished I didn’t have cerebral palsy. I remember the teachers being surprised and not really knowing how to react. Looking back, I wonder what I was thinking as eight or nine old year kid?  Did I really feel that different? Was there something that I was unable to physically do on the playground that day? What made me say that at that young age? Of course, I don’t know the answer, but I find it interesting that I remember that particular time. It’s something that I still wish for to this day. As I’ve discussed in previous entries, unlike many people with similar circumstances, I would love to be “cured”.

I remember my first year of junior high my mom asked me to make a Christmas wish list. I listed some tangible items, but then the last wish I wrote down was for my two best friends from elementary school to be able to attend the same junior high school I went to. Because of where we lived, I attended a different junior high school than most of my friends from elementary.  I made friends in junior high, but they were never as close. As a teenager with significant physical challenges, making friends was a bit of a challenge. Obviously, that wish couldn’t happen, but it just shows how my wishes have always been a little different even at a young age.

As an adult, my wishes haven’t changed too much. While I still wish for a cure, I find myself realizing that a cure probably isn’t going to happen in my lifetime. I wish for other intangible things like love, a relationship with a significant other, and a family. While I know these things may not be in the cards for me, I will always have a desire and wish for them. It’s a running joke between my mom and I—each time she asks me what I want for my birthday or Christmas, I tell her I want a guy. She always says the same thing to me. “I can’t help you with that one,” she says.

As a person with limited mobility, I often wish I could visit people more. Obviously, during the pandemic, everyone feels that way, but when we’re not under restrictions, I wish I could just go visit my family and friends. Due to things like accessibility, transportation, and cares, I’m not able to just go visit people—I have to plan every detail if I go visit people. While I’m used to it and my family and friends understand, I would love to just hop in a car and go visit friends. Fortunately, my friends and family are pretty good at making the effort to come visit me or making arrangements far in advance, but I’d love to be able to spontaneously go visit them.

I also wish for other intangible things like health for my family and I, and better services to assist me. As I get older, my future is becoming more and more uncertain. With needing the amount of care I do, reality of my future is becoming increasingly important. How long will I be able to stay in my apartment? How much longer will my parents be able to take care of me? These questions are why I constantly wish for continued good health for my parents and I. Most adults likely wish for good health for their loved ones; however, when you rely on family as much as I do, you constantly worry about their health.

Wishes are like dreams. While some are tangible or realistic, others are far-fetched and fantasy like. Wishes and dreams often keep us going. A wish may seem impossible when first thought of, but, maybe after some planning and research, it might seem more doable. They may ignite energy in us to continue to strive for something that may or may not be possible. Almost everyone has both realistic and far-fetched wishes. Next time you blow out the candles on your birthday treat, I encourage you to make two wishes—one that seems attainable or realistic and one that doesn’t seem possible. I hope both wishes come true for you!

***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.

2021 is finally here! With vaccines beginning to be administered, hope is on the horizon. There are many different factors to consider regarding the vaccine for COVID-19. With it being so quickly developed, is it safe to get? Are there long-term side effects we don’t know about yet? Who should be priority and what is the criteria that makes them so? Should employers be able to make it mandatory for employees? How long will it take to get enough people vaccinated so the world can return to some sense of normalcy? How long will the vaccine protect people? These are all questions circulating in today’s society. Where do people with disabilities fit into this discussion? That’s a good question. Like almost every minority, at least for myself, I feel like I’m at a higher risk even though I’ve already had it once.

In previous entries, I’ve discussed how careful my immediate family and I have been from the beginning. We wear masks everywhere we go and really limit our outings and gatherings. My nephew is over six months old and we still mask up when we’re around him. My sister works in the healthcare field, so she and her husband wear masks anytime they’re around anyone else. We knew I’d be at risk of getting it simply because I have caregivers come in. Sure enough, the first week of college classes, a worker was exposed in a class, caught it, and unknowingly brought it into my house. In turn, myself and two or three workers contracted it. Fortunately, my symptoms were very mild, but I ended up having to go to my parents for over two weeks because all of my workers were quarantined. Miraculously, somehow, my mom and dad didn’t get it (that’s still something weird about this virus—how can both of test negative when I was with them 24/7 for over a week? It doesn’t make any sense), but what if they caught it, and got really sick? What would have happened? Questions like these are what keep me up at night.  We just had another scare recently where a worker’s husband tested positive and the worker exposed me without realizing it. As a precaution, I went to my parents for a few days. After talking with my doctor, we found out it’d be extremely rare for me to catch it again, and I’m probably not even a carrier anymore. Again, there is still so much unknown about this virus that it’s hard to know what to do.

How should the vaccine be prioritized? Obviously, healthcare workers and first responders should take first priority. They’re risking their lives to help and protect others who may or may not take this virus seriously. After that, I’ve heard residents in long-term care facilities will be next. While I understand they're at higher risk because they live in a congregate setting, I guess I have sort of a hard time understanding this simply because they unfortunately don’t have the opportunity to leave the facility most of the time. That said, if it means that residents can finally have visitors, I totally understand why they’d be next. I’m just not sure that’s the case as of yet. After people in community living settings, I think it’ll go by a combination of age and health risk factors. Where will people with disabilities fall in this equation? That’s the million dollar question for many of us. In my opinion, it’s going to widely vary depending on individual circumstances. I haven’t talked to my primary physician about this yet, but I’ve talked to other doctors and they feel I may be a higher priority just based on having cerebral palsy. Since I’ve already had it, though, I’m not sure how that’ll factor into it. For those of us who rely on other people to take care of us, it’s an uneasy time. We have no choice but to be physically close to people. I’m hoping in-home caregivers will have some priority just like people who work in long-term care facilities did. Time will tell.

The other question is whether the vaccine should be mandatory or not. Even though, I personally believe that everyone should get the vaccine, I understand why it can’t be mandated. Especially with this being such a new vaccine, people have reservations. People have the right to refuse medical treatments. Many people don’t believe in any vaccines which is their right; however, I don’t know where the line is drawn between personal choice and public safety. That’s a hard question that I’m not going to get into. Therefore, as an IRIS participant, I can’t force my workers to get the vaccine. This is why it’s important that people who are in situations like myself (those who need assistance from other people to complete daily living skills) get the vaccine as soon as possible.

With a vaccine beginning to be administered, I feel hopeful. While understandably, some people are hesitant to get vaccinated, I’m more than ready. Even though we don’t know the long-term effects of it, my opinion is that we have something that will most likely keep us safe and make it so that we can gather freely again hopefully sooner than later. Yes, getting the vaccine is risk, but I’d rather take the risk than continue to live in isolation forever. 

***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.

Waiting. Whether it’s waiting for a red light, waiting for a loved one to come home, waiting for a package to come in the mail, or waiting for something else, whether we like it or not, waiting is a part of life. Some people do it better than others, but, generally, people don’t enjoy waiting. The saying, “patience is a virtue” comes to mind when we discuss the challenges of waiting. In a past entry, I talked about how people with disabilities are generally pretty good at waiting because basically we many times we have no other choice than to since we depend on assistance from others. However, we aren’t the only ones who need to have patience. The people who we work with and interact with often need to have some patience as well.

Having severe physical limitations, things take much longer to complete most of the time. Things as simple as grasping a straw to take a sip of water or hitting a button to open the door can take me a lot longer than the average person. With the type of cerebral palsy I have, when I’m under any sort of pressure to do something, my body freezes. When my brain tells my muscles to do something under pressure, it’s like they lock up. It’s not only frustrating for me, but it’s also frustrating for people who help and interact with me.

My mom, dad, sister and close friends understand this pretty well and know not to rush me most of the time. However, like everyone else, they occasionally get impatient and get frustrated with me. They know it’s part of my disability and that I’m trying my best, but, sometimes, understandably it’s frustrating to wait for me to do the simplest of things. They get irritated with me, and, often, want to just quick do whatever the task is for me. Sometimes, that isn’t possible though. For example, when I’m talking to them using my communication app on my phone, they often try to guess what I’m trying to say before I’m finished typing it. Now, others who use communication devices absolutely hate when people do this; however, I personally don’t mind. If they guess wrong, I just continue typing. If they guess right, we can just move on with the conversation faster.

It’s frustrating when others close to me don’t understand this. I remember one family Christmas a few years ago, I was trying to talk to a family member about something, and the person got up and walked away while I was trying to talk to them. I realize the person did this because they didn’t realize I was trying to talk with them, but that is so frustrating. People who don’t realize that often things take me longer, don’t know to wait for me. 

Sometimes, even though it’d be much quicker to have someone help me, there are things I like doing independently. This is the case for many people with disabilities. While we appreciate the help, sometimes, it’s gratifying to be able to do things by ourselves. This example is funny, but it demonstrates this point well. For me, I’m able to physically use a tissue to blow my nose myself. As weird as that sounds, you have to understand the skill it takes to grab a tissue and hold it up to your nose yourself when you have limited fine motor skills. Would it be easier and quicker to have someone hold the tissue for me? Absolutely, but it’s something I can do independently. Other people with similar circumstances use opening a door as an example. Would it be faster if someone else opened it for you? Sure, but independence is such an important thing.

Over the last few years, I’ve seen many doctors for various reasons. One thing I’ve noticed is that for whatever reason doctors seems to be patient with me. Most of them wait for me to communicate, and usually don’t look to my mom for what I’m trying to say. I’m impressed by this. Maybe it’s because they know me well enough to know to wait. It’s nice—I really appreciate it. I wish others would follow.

I fully admit, I lose my patience with myself and others from time to time. It’s human nature. Living with a disability has taught me lots of things, but patience is one of the biggest things. In my situation, I literally have to be patient with my body. If I try to rush things, it’ll likely end up taking me significantly longer. People who get to know me learn this pretty quick most of the time. People who don’t know me well get frustrated waiting for me to do things. While I understand, unfortunately, I can’t change that. It’s something I deal with on a daily basis, and I’ve learned to try my best, and accept that some people will never understand why things take me longer. Patience is truly a virtue, and, while some have more than others, waiting is something everyone has to do to some extent. All the time—but especially during the holiday season this year—remember people are doing the best they can. Be patient with others. Take the time to talk to people. Try not to rush people. Life is too short!

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

Can you believe Thanksgiving is in just a few weeks? Where has this year gone? It’s no secret that 2020 will be a year people won’t soon forget. As the holiday season approaches, many people often take time to reflect on the year that has gone by. No doubt that this year was different than we all could have imagined. While most of the issues were undesired, many people found lots of silver linings. In a time where the world is kind of chaotic, there’s a lot of things to be thankful for.  As a person with a significant disability, each Thanksgiving I try to take a few minutes to reflect on the year. Many times, it’s easy to get caught up in the busyness of the holidays, and forget what’s really important. For people with disabilities, it’s so important to reflect on the positives in our lives.

As I begin to think about the year that has gone by, I’m amazed by all that has happened. For starters, in January, I was having so many care problems. I began the process of switching to Family Care in hopes it’d be easier. As it turned out, that wasn’t the case. It was good to learn how it works, but it wasn’t going to work for my current situation. It was very disappointing to find out that there is no real good care program for people like myself. I’m still shocked by this, but it just confirms more advocacy is needed. Timing was impeccable in March when my parents and I decided to start in IRIS. All this was happening right when the pandemic hit.

Everything was shut down in the beginning of March. Most of my caregivers went back to their hometowns because the colleges were shutdown. I’m fortunate that I was able to move in with my parents for three months. If they weren’t able to take care of me, I would have ended up in a nursing facility.  As much as I complained about being at their house on their schedule, I’m very thankful that I was able to stay with them.

When we realized that the pandemic wasn’t going anywhere anytime soon, my mom and I came up with different care shift schedule to try. We interviewed and hired several new workers. I’m very shocked by how well things have been going. This has been probably the best four or five month stretch we’ve had in years. Now, I know that after the holidays, we’ll have to hire some new people because a few of my current workers are moving on, but it gives me hope that this will continue to be doable.

In June, I became an aunt for the first time. As hard as it was emotionally for me, words can’t describe how amazing my nephew is. He brings so much joy to the family. I’m so thankful that I’ll be able to watch him grow up and be part of his life.

I haven’t shared anything about this because I didn’t want people to feel bad, but in September, I had COVID – 19. It ran through most of my workers and I. I had to go to my parents for about three weeks. Thankfully, my symptoms were very mild, and somehow, neither of my parents got it. Coincidently, during that time, I ended up in the hospital with a gastrointestinal issue, but, thankfully, I didn’t need surgery this time.

As weird as this sounds, I’m very thankful that so much has gone virtual this year. As I’ve discussed in previous entries, for me, not having to worry about transportation or cares, I’m able to attend many more events and meetings than I otherwise would have.  Like everyone else, I miss seeing people in-person, but, with everything being virtual, I have more opportunities to participate in things.

The key word is thankful. With so much going on in the world, sometimes it’s hard to see the positives in life. I’m incredibly thankful for the life I have. Things could be so much worse. It’s because of the overwhelming support from my amazing friends and family that I’m able to be as successful as I am. Unfortunately, I know everyone does not have that support. It’s sad to think about and hear stories about people not having that kind of support. Do I find myself still being down and wishing things were different? Of course, I do. However, in those times I have to remember what I have and what I’ve been able to accomplish.

This Thanksgiving, I challenge each of you to take five minutes and reflect on the good things that happened this year. Yes, there were a lot of unpleasant things that occurred, but I’m willing to bet if we truly think about it, the good outweigh the bad.  I believe it’s true - - when bad things happen, it brings out the good in people. This year is the perfect example of it. We need to remember to be thankful for what we have. Happy Thanksgiving, everyone. I’m thankful for what each of you do for the disability community.

***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.

“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.

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.

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.