“Don’t stare.” “Don’t point.” “Come here.” “Lets go.” These are things we often hear parents say to children when they see something out of the ordinary. It could be a teenager with bright blue hair, a same sex couple kissing, or a person with a disability having a meltdown. Obviously, there are hundreds of millions of things that people consider out of the “norm.” A few years ago, I wrote an entry about going out of the norm. I just had gotten a drastic haircut that many considered out of the norm, and I talked about how people need to accept things that are out of their norm. While that’s still entirely true, there are some double standards that many minority groups, including the disability community, impose on themselves.

“How do you treat a person with a disability? Treat them the same as you do anyone else.” There are several memes on social media that have that message. It portrays that people who have disabilities should and want to be treated just like everyone else. While that’s true most of the time, the reality is that people with disabilities often require additional attention and support to be able to live life. The extra support needed automatically puts a stigma on us that in fact we can’t be treated just like everyone else. It’s not a negative thing, but it’s just a fact. Accommodations like handicapped parking, accessible seating, and disability benefits just amplify the fact that we cannot be treated like everyone else. While these accommodations are completely necessary, they automatically put people with disabilities out of the norm.

Having said that, there are some things that sometimes happen in the disability community that portray the idea that we don’t want to be treated like everyone else. Several years ago, I wrote an article about “perks” of having a disability having a disability. I discussed how when I was young my family felt very uncomfortable when going to the theme parks in Orlando because we were always ushered to the front of lines just because I had a disability. Why should we get special treatment just because I have a disability? They have tightened up the process since then, but that situation shows that people who have disabilities get special treatment. Personally, I feel that there are very few circumstances when that’s appropriate (like when a person is terminally or if someone has difficulty waiting in line specifically due to a disability).

Each spring, I cringe as the Night to Shine posts start popping up on social media. A Night to Shine is a program Tim Tebow sponsors. It’s a prom for people with disabilities. They host several across the country and usually many media outlets pick it up as a feel-good news story. At first, I’m sure most people think that it’s a great wholesome idea, but is highlighting people with disabilities going to a segregated dance really what we want to see in the 21^st century?  I know there are many different opinions about this, so I’ll leave it at that. Regardless of the various opinions, it’s another example of treating people with disabilities different.

Another controversial topic in the disability community is when adults with intellectual disabilities visit Santa. I don’t have an intellectual disability or have a close family member who does, so I’m going to refrain from sharing my opinion on this. Whether people agree with it or not, doesn’t change the fact that when adults with disabilities visit Santa, it’s out of the norm and amplifies that we aren’t treated the same as those without disabilities.

As a person who has a significant physical disability that often creates assumptions that I have an intellectual disability, it can be challenging to demystify wrong ideas when there are so many double standards. The disability community preaches that we want to be treated just like everyone else, but yet, when people see us getting special treatment or partaking in activities meant for children, what is the average person supposed to think?

We have come a long way in “normalizing disability,” but we have a ways to go. Do we, as a disability community, really expect to be treated like everyone else? In my opinion, that’s a question that we’re still trying to figure out how to answer. On one hand, we want to be treated as “normal” as possible, but, on the other, society continues to see people with disabilities receiving special treatment and participating in activities that aren’t age appropriate. I’m not sure that we do actually want to be treated like everyone else. Sure, in some way many of us do, but, in other ways, it’s just not feasible to “treat people with disabilities just like everyone else.”  Maybe the disability community needs to start thinking about how we should reframe our message. Do we really want to be treated like everyone else or do we want to be accepted and respected for the people we are? I tend to think it’s a mixture of both ideas for most people in the community. At least, that’s the case with me!

***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

Grocery shopping. Appliance shopping. Window shopping. Shopping for yourself.  Shopping for others. Shopping for necessities or shopping for fun. There are many different types of shopping that people do. While some people absolutely despise shopping, others really enjoy it. The way we shop has evolved over the years. Have you ever thought about how many different steps it takes to actually buy something? From figuring out transportation to get to the store, to reaching and grabbing an item or rummaging through racks of clothes to find the right size, to putting the items in the cart or carrying them to the checkout, to getting cash or a card out of your wallet.. There are many things that people have to do when going to a store. Most of the time, these steps aren’t even thought about because most of the time they become second nature to people.

“Do you have your list ready?,” my mom always asks me about a week before Thanksgiving every year. I always know what list she’s referring to even when she doesn’t specify it—it’s my list for Black Friday shopping.  For well over 25 years, my mom and I have gone shopping on the Friday after Thanksgiving. It has become tradition.  When my sister was younger, she used to come with us and we would have a fun girls day. Starting when I was in college, it was the only day I had to get all of my Christmas shopping done.

Before online shopping became a popular option for people, people had no choice but to physically go to stores to get items.  For most people, getting to stores isn’t usually a problem; however, when you have physical limitations that prevent you from being able to drive, it can often become an obstacle. As I’ve written about in previous entries, finding reliable accessible transportation to get to and from places is often a huge barrier for people who are unable to drive.  In Oshkosh, there is only one accessible cab company for non-medical rides (although they do medical transportation which is likely a big part of the problem) and it’s so unreliable. For example, a few years ago, I waited nearly three hours for a ride back from the grocery store. When you have a limited number of care hours, you can’t spend over half of the shift just running to the store— it isn’t feasible. The bus system is accessible, but, again, it takes too long to get to and from stores. Needless to say, I currently do most of my shopping when I’m with my parents or online.

Getting to the store is just the first step.  Nowadays, many places have automatic doors, but, if that isn’t the case, I have to wait until someone opens the door for me. Fortunately, people are generally eager to help. Once I’m in the store, I’m able to navigate through on my own pretty well. Having said that, problems arise when the aisles are narrow or products are in the middle of them.  This frequently happens especially during the holiday season. I try my best, but I’d be lying if I didn’t say I’ve never taken out a display or knocked multiple items off shelves and racks before.

If I’m looking at clothes, I’m usually able to rummage through the racks with my left hand. Albeit, tricky at times, I have just enough fine motor ability to move hangers up and down the rack.  When I find a clothing item that I’m interested in looking at closer, I’m able to grab it and put it on my lap.  Depending on what is, I can usually balance it on my lap long enough to decide whether or not I want to purchase it. Yes, items frequently fall on the floor and occasionally get run over, but I try my best. Although, not always the case in the past, someone is usually in the store with me, so I’m able to take the item to that person either to carry or put back on the rack or shelf if I decide I don’t want to buy it (I don’t have the strength or coordination to be able to put things back where they came from).  

If I’m shopping non-clothing items, depending on what it is, I’m sometimes able to grab the item off of the shelf and put it on my lap. Obviously, heavy or breakable things are off limits for me to try to pick up. If I’m able to reach and grab a thing off the shelf and set it on my lap safely, I then usually try to balance it and bring it to the person who is with me. Again, things occasionally end up on the floor, but I do the best I can.  

When I was going to school in Whitewater, there was a grocery store just a few blocks from campus. When the weather was nice, there were a handful of times when I went grocery shopping by myself. I don’t know how I ever managed to do it, but I would even get a gallon of milk on my tray. Since there were lots of people who had physical disabilities in Whitewater, people in the community were used to helping out. People would reach items off shelves for me. I even had cashiers go into my purse, take a check out of my checkbook, and put it through the register which would automatically fill it out. They also knew to hang the bags on the back of my wheelchair. It was a neat situation because it wasn’t unusual to see a person with a significant disability shopping alone in Whitewater.

Now that I have a worker with me most of the time, shopping is a lot easier. Fortunately, my apartment is less than a mile from a grocery store, so when it’s nice out, I’m able to walk to the store with my caregiver.  The person follows me around with a cart and grabs the items that I indicate I want. When I checkout, the caregiver helps me place the items on the counter and then gets my credit card out of my wallet. Obviously, with having people go into my wallet, I have to know exactly what I have in it. Furthermore, it goes without saying that I have to trust the person who is going into my purse. Once I’m done paying, the worker bags up the groceries (or whatever the items are) and hangs the bags on my chair.  If there are too many bags to fit on my chair, the worker will carry them.   Now that I have a caregiver all day, I’ll try using the cab to go shopping more during winter— maybe it has improved.

 The concept of online shopping didn’t become popular until the mid-part of this quarter century. As it became more and more advanced, it changed how the world runs.  For many people with disabilities and disabilities and health conditions, being able to shop in the comfort of their own home has been life-changing. As simple as it sounds, being able to make purchases totally independently has been awesome. I have my credit card information in a secure place where I can independently access it, so I don’t need any assistance buying things online.

Personally, I like doing a combination of in-person and online shopping.  While the convenience of shopping is really nice, I really enjoy going to stores. Shopping often turns into a social opportunity and I love looking at different things. For me, navigating through the jammed aisles and crowds is part of the fun of shopping. Online shopping is great in certain situations.  There have been multiple times when I’ve purchased items off Amazon because I knew I’d receive it within two days.  That’s a really useful feature when you can’t just hop in the car and run to the store. 

Whether people like it or not, shopping is a part of almost everyone’s life. Some people face unique challenges while navigating through stores; however, if you love to shop as much as I do, you don’t mind navigating through those obstacles in order to partake in something you thoroughly enjoy!

***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 I add you as a friend on Facebook? Do you follow so-and-so on X or Instagram? Did you see what he/she just posted? Did you get this snap? Did you see the Tiktok about this or that? Like it or not, questions like these have become part of normal conversation in today’s world. Like it or not, social media has become a prime source of communication in our society. There is a wide spectrum of how much people use all of the platforms that have been developed. While some people avoid it at all costs, others literally make a living from it. It not only is a source of entertainment, it has become an information enterprise for everything imaginable. Social media has opened up a world of opportunities for people—especially those who have disabilities or health conditions.

“What did you post now?” my mom used to frequently ask me when she’d get a random call from my grandmother. Yes, my late grandma was an avid Facebook user. I don’t know which of my cousins helped her set it up, but she absolutely loved being able to see what all of her grandchildren were up to. She’d comment on nearly every single thing I’d post. I think she especially liked it because it gave her a way to connect with me since she couldn’t talk with me on the phone. I remember when I first got Facebook. It was my second or third year of college and my friend came into my dorm room and asked if I had heard of Facebook. I hadn’t, so she helped me set my profile up. At the time, I didn’t think much of it as it just seemed like the cool thing for college students to do. I started adding a couple friends from high school and it was fun to reconnect.

It wasn’t until summer when I was at home that I began to realize what opportunities Facebook had for me. As more and more features were added, I learned just how beneficial Facebook would be. Not only is it a way for me to connect with friends and family, it’s a social outlet where I can express my thoughts and feelings. This is where it has gotten me in trouble. Having significant physical limitations and also not being able to verbally speak leaves me pretty isolated—it’s just a fact. Facebook has become a prime source of socialization for me. Although, I’ve gotten much better about not venting and over sharing, especially in the early years, I used it to vent about my problems or feelings. There were many times when my mom would get a call from grandma asking what was wrong or what my “status” (that term isn’t really even used anymore) was about. Admittedly, I was the queen at vague-booking—I’d post something vague and then not give details or reasons why I said that? Why did I do that? Was I seeking attention or pity? I’m embarrassed to admit it, but probably. I try not to do that too often anymore, but I do slip up once in awhile.

Facebook has also allowed people with disabilities to connect with each other. I belong to many cerebral palsy groups and I’ve learned so many things from them. From tricks how to make toilet seats more stable (yes, that was topic because so many people with cerebral palsy have problems with toilet seats breaking), to side effects of medications (that doctors may not be aware of), those groups a source of a lot of information. There are also Wisconsin specific disability groups that I belong to. Obviously, I think everyone reading this probably can guess that those have been pretty active lately with all the changes happening, but, even before, they were a great resource for people navigating the disability system. We’re able to share experiences, resources, and help each other out. It’s pretty neat.

In recent years, I’ve used many job groups on Facebook to recruit caregivers. I’ve actually found quite a few workers in groups. Until a few months ago, I used a private group to communicate with all of my workers. The only problem with that we that I had to be “friends” with all of the people who I hired. It never turned into a big issue, but it wasn’t ideal. I now use a different messaging app that works pretty well—it’s a little bit more of a professional way to do things which has been working pretty well. My workers’ life can be kept private, and so can mine.

Having said that, though, there were a handful of times when social media has saved the day!  A couple of times I’ve noticed that a worker has posted that they’re going out of town or going to be doing something else when they were scheduled to be working with me. We were able to figure it out and avoid a problem, but it just explains how social media can be really helpful in certain scenarios. In other situations, I’ve been able to get some assistance with various things by posting on social media. The example that comes to mind is a few years ago when my straw fell out of my water bottle right away after my worker left in the morning. At the time, I was alone all day, so it was a bit problematic. I posted something to the effect of I was going to be really thirsty that day, and friends commented asking what they could do to help. Someone was able to stop by and help me. Those are just two examples of how Facebook has literally helped me solve problems.

I’ve written mostly about Facebook in this because that is what I use the majority of the time, but people with disabilities use a variety of platforms. Some influencers have made a career out of sharing their story on social media. There are lots of influencers spend hours creating content about their personal lives to share on many different platforms.

Personally, I have a love/hate relationship with social media. Most of the time, I love being able to connect with so many people who I otherwise wouldn’t be able to. I love it; however, admittedly, there are times when it is too much. To no fault of their own, people often post about exciting updates and milestones happening for them and their families. While I love seeing what everyone is up to, some days it’s too much. I selfishly can’t help but wish I could post similar things. When I post about exciting things happening in life, I often wonder what people think. Do people think I’m being too boastful? Will people care about this? Does this sound like I’m provoking pity or praise? On the other hand, though, I know my family and friends enjoy learning what I’m up to. Since I don’t have many opportunities for social interaction, Facebook has become a social outlet. Over the years, I’ve gotten better at finding a good balance. While I’ve learned to refrain from posting most of my negative thoughts and opinions, I’m able to post enough to receive social connections I need.

Will social media continue to be as prevalent as it is today? Probably not, but until the next big technology innovation come into fruition, it gives many people access to a world of opportunities!

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

A cool vehicle. A beautiful house. The perfect family. A high paying profession. The top leadership position of an organization. Whatever the situation may be, there are many different ways worthiness is portrayed. While, sometimes it can be difficult to recognize, every single individual on this earth has worth. Society often tries to dictate our conceptions of worth. For example, in our society, it’s often assumed that all convicted criminals are terrible people who don’t have any worthiness. However, most genuine people agree that is false. Whether it’s an interview for a job or a tryout for a professional sports team, most people have had to “prove” that there are worthy of something at least once in their life. When people question the worthiness of others, multiple issues often arise.

“As someone who deals with high anxiety and depression as it is, and hearing politicians and lawmakers question your worthiness and existence doesn’t help.” I’m quoted something to that effect in a recent Milwaukee Journal Sentinel article I was interviewed for. Did I question my response when I saw that they used that quote? Absolutely. I wondered why I typed that in an email response when I knew that it could be shared with thousands of people. However, as I thought about it more, I realized that it is what people need to hear. That statement is completely true.

Although, we’ve made significant progress in the last 50 years, the disability community as a whole already has an underlying stigma of being less worthy than the average American. Society often doesn’t see the people who have disabilities as having potential to be contributing citizens. Obviously, the whole visible vs invisible disability issue often comes into play with this, but it shouldn’t matter. People with disabilities have done and continue to do amazing things. Many famous people have or had disabilities and made incredible contributions to society. People such as Thomas Edison, Stephen Hawkins, Helen Keller, Whoopi Goldberg, Tom Cruise, Alexander Graham Bell, and so many others either have or had some sort of a disability. Think about all the great contributions they have made.

Over the last ten months, many people with disabilities have felt like we’ve been under attack by the federal government. Whether it be the cuts to Medicaid, the dismantling of certain agencies or departments which provide vital services and supports, the rescinding of laws that require buildings to be accessible, cuts to special education funding, changes to food assistance programs, or talk of more institutions being opened… It’s seemingly been endless. It’s been one punch after another.

To add to it, when we have top politicians making very false statements about what people who have certain conditions are capable of doing, it makes the whole community feel violated.  We also have the Secretary of Health and the President of the country making unproven statements about what could cause certain conditions and what could cure the condition. I don’t have the specific condition, so I’m not going to pretend that I know what it’s like hearing these false statements from government leaders, but it definitely adds to the rhetoric that’s happening as of recent.

The most concerning thing to me, personally, is that talk of Institutionalization has started. Obviously, I know that my needs are pretty high which is concerning when talk of putting people with disabilities back in institutions comes up. Nobody should be institutions regardless of their circumstances.  Personally, after all the hard work my family and I have done to get me to where I am today, I can’t fathom being forced into an institution. I honestly think that it would put me into such a dim mindset that I don’t think I would want to live. As dramatic as it sounds, it’s true. I can’t imagine being forced into an institution. It’d mentally and emotionally kill me. Not only would putting people with disabilities back into institutions be harmful to the individuals, systems are not ready with staffing to take on the disability community that has been living on their own independently. Believe me, there is already a huge caregiver shortage, and shoving people who have significant needs in to institutions would just make it worse. As someone who has pretty high needs, if I was forced into an institution, not only would it be mentally devastating, I have fear that my needs wouldn’t be met.

People with disabilities are just as important as everyone else. We may need some additional assistance and supports, but everyone needs some help no matter who you are.  People often forget that the disability community is unique in that anyone, regardless of any kind of characteristical status, can unexpectedly enter at any time. Why is there this rhetoric going around that people with disabilities aren’t worthy of getting the assistance they need to be able to live a successful life?

For me, having self-confidence and self-worth go hand in hand. Having top officials slash the assistance programs you rely on is anxiety provoking to say the least. It makes one question their own worth. Am I not worthy enough to get the assistance I need to live my life? That’s not a logical question, but it has crossed my mind too often lately.

The bottom line is that people with and without disabilities are worthy of receiving the assistance they need to live the life that they desire. Unfortunately, it’s bound to be an uphill battle for people with disabilities for quite some time, but I know that our community is made up of some strong relentless advocates who won’t stop advocating for what’s right!

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

A steering wheel cover. An ice maker for your refrigerator. Gourmet coffee. That special mouse pad with your favorite team on it. There are many different types of things that adults invest in to make life easier and more enjoyable. Whatever it may be, adults often have various types of expenses.  While what is considered a necessity varies from person-to-person, there are several things in life that are optional. Optional things may be considered “wants” by some people; while others consider them needs. As we grow up, we learn the basics of wants and needs. Generally, needs are things that you can’t live without, and wants are things that you can function without out but you desire to make life easier or better.

When it comes to medical equipment and supplies, most people have some sort of health insurance. Of course, coverage of what’s paid for varies widely depending on individual circumstances, but often a lot of the “necessary” medical equipment and supplies are at least partially covered by insurance. Like many people who have significant disabilities or health conditions, I am on Medicaid and Medicare. As I’ve explained in previous entries, I’ve received a lot of equipment, supplies, and services through Medicaid over the years. Everything from electronic wheelchairs, to shower chairs, to cares and medical services…the list is truly endless of what Medicaid has provided me. Simply put, I rely on these goods and services to live.

Recently, my IRIS Self-Directed Personal Care nurse came to do her quarterly visit and I asked her if Medicaid would pay for more than two boxes of gloves per month. With having a caregiver with me 16 hours a day now, I’m going through a lot more gloves. She explained that Medicaid would buy more gloves, but it would come out of my SDPC budget which would mean either less hours or a lower wage for my workers. Obviously, I’m not going to do that because I need all of my hours, and I’m not going cut my workers’ wages just to get more gloves—that’s ridiculous! My nurse told me that the two boxes Medicaid provides really technically aren’t for my workers; they’re for “personal use” meaning for friends and family to use. When I was with care agencies, they usually provided gloves for their employees, but, in the IRIS program, participants are expected to provide the gloves for their workers. While I’m sure you could put them in your regular IRIS budget, not many people would sacrifice another service just to get gloves for their employees. On the other hand, at least for me, not only do I want my workers to wear gloves while doing certain things, I want them to be able to wear gloves whenever they want while working with me. It’s just common courtesy of both parties.  My nurse also said that most people buy gloves in bulk on Amazon, so that’s what I’ll do. To me, that’s a flaw in the system, but it’s one not worth fighting for—there are far more important issues to be advocating for!

Another example of something that isn’t covered by most insurances is a power Hoyer lift. Several years ago, I wrote about getting several pieces of medical equipment to make things easier and safer for my caregivers. One of those pieces was a Hoyer lift.  It was my very first time using one, so it was a learning curve. Unless there are very specific circumstances, Medicaid will only pay for manual Hoyer lift. While manual Hoyer lifts do the job, it quickly became very apparent that a power lift would be so much easier not only for me, but especially for my workers. In today’s world, where caregivers are so hard to come by, making things as easy as possible is imperative. So, I used my personal funds to purchase a power lift. While I’m trying not to reveal too much about personal finances, I do have an ABLE account which allows me to save money that can be used for disability related expenses without losing my benefits. I bought a power lift and sling using that account. It makes things so much easier. The manual Hoyer lift is at my parents’ house and we use it when it when I’m there.

Manual wheelchairs are another example. For obvious reasons, if you have an electric wheelchair paid for by insurance, they usually don’t fund another manual wheelchair. Although, I don’t use them much anymore, I’ve bought a few manual wheelchairs out-of-pocket. When I was younger, I used them a lot more, but my body has changed and it’s really not comfortable to be a manual chair for an extended period of time anymore; however, I need one to be able to visit relatives’ homes.

There are several other disability-related things that my family and I have paid out-of-pocket for over the years. Everything from wheelchair accessible vans to clothing protectors, there have been a lot of things we’ve paid for to make life better for me. While, I can’t lie—I wish more than anything I could spend my money on things like gas for a vehicle or new sports equipment for my children—I’m grateful that I have a great family and I have at least some ability to purchase those extra but essential things that help me live the best life possible!

***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

Family. Health. Career. Friends. Faith. Finances. What do these things have in common? They’re all common priorities for most adults. There are many different types of priorities that people have. Often, circumstances dictate what people prioritize in their lives. Sometimes, individuals have the ability to choose what their priorities are. We don’t even think about it, but we prioritize different things every day. While some priorities never change for people, many change over time. Many times, people are in disagreement about what priorities should be, but what people choose to or not to prioritize is ultimately the decision of the individual.  

While most people my age have families and kids which obviously are their priority, I find myself having totally different priorities. Recently, I was in a meeting for one of the many councils I’m on, and I told them that I wouldn’t be renewing my appointment when my term ends next summer. This particular council does a lot of great work around various disability issues in the state. This council has a lot subcommittee meetings and most of the members are deeply dedicated and spend endless hours working on various council projects. While I full-heartedly believe in everything they’re doing and would love be able to help more, I just can’t. Partly because of circumstances and partly due to personal preferences, my priorities are very different from many people who are on the council.

Like most people, my priorities have shifted over the years. After graduating college, my two main priorities were to move into an apartment and get a job. Why were those such major priorities for me? Likely because it was just the “normal” thing to do after graduation. A few years back, I wrote a journal entry about expectations. As I explained in that entry, growing up, I had the same expectations as my peers, so, after college, the next natural things for me to do were to get an apartment and find a job. Obviously, both of those milestones took some extra time and effort to make happen, but, with support, I was able to accomplished both of those priorities.

As I got more involved in disability advocacy as a whole, I quickly realized that I was going to have to set limits and prioritize what I wanted to be involved with. For the first few years, I tried to be involved in everything I could. I said yes to every opportunity that came available. I was living on cloud nine being involved with so many things. I felt like I was making a difference and contributing to society; I absolutely loved it!

A few years into it, I began having more health and care problems. As hard as I tried to do everything, I couldn’t. I had no choice but to prioritize my health and care issues because if I didn’t, I wouldn’t be able to function enough to do any of the advocacy things that I love. Thankfully, in the disability advocacy field, when health and care issues arise, people tend to understand why you might not be able to participate as much—often the issues that sometimes prevent us from participating are the things that we advocate for. It’s a pretty unique happenstance.

As the years have gone by, I’ve found myself continuing to try to find a good balance. I’ve learned my passion in the disability advocacy field is around long-term care and supports. While things like transportation, housing, and employment are vital to those with disabilities, for many people, including myself, the long-term care system is really what determines our life as we know it. I realize that housing, transportation, etc… are usually seen as part of long-term care. While those things are definitely important, when I say long-term care, I mean the actual hands-on care that people need to physically survive. This is my priority of advocacy for a selfish reason—it’s the area that affects me the most.  It’s something I deal with and will continue to deal with every single day. A big part of it is the ongoing caregiver crisis, but it goes beyond that. The “system” is not setup for people with significant disabilities to live life in the community like everyone else does. Thanks to years of advocacy, there’s no doubt that it has significantly improved, but there’s a long way to go. This will likely be my advocacy priority until the day I die. It’s something that is near and dear to my heart because I live and breathe it every day.

While I’d love to be involved in more councils and projects, I have lots of other things that take priority in my life. Things such as hiring and scheduling caregivers and managing the ins and outs of life take time. Albeit, very part-time, but I also work. To me, having a job is an accomplishment and it’s one that I’m extremely proud of. I never want to use this as an excuse, but it’s a fact that has to be considered when I talk about priorities—people who have cerebral palsy use up to three times as much energy and our bodies age faster than the average person. When you take that into consideration, it makes you think about life a little differently.

In recent years, I’ve really taken a step back in what I volunteer for. Although, it’s extremely important, there’s more to life than advocacy and work. As we age, we realize we need to take time to do what we enjoy and spend time with those close to us. While advocacy will always be a priority in my life, there are several other things that are above it.

Everyone has different priorities and they change as we go through this journey called life. I encourage everyone to take a moment to think about your personal priorities. Are you satisfied with how you’re prioritizing the things that are most important to you? If not, take a few minutes to think about how you can make changes in your life to prioritize what’s most important to you. Remember, you only get one life to live!

***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

Have you ever been thrown into something that you never imagined yourself doing? Whether it’s learning a new skill set to keep your job, traveling around the world to support your significant other, protesting about something at the Capitol, assisting a loved one with intimate cares, or another thing where you were forced to learn how to do something so you or someone you care about could pursue an essential step to move forward in life, almost everyone has experienced some sort of thing where they had to do something that they never imagined themselves doing. Usually, in these situations, although it may be uncomfortable and stressful, people are more than willing to do whatever it is to make life better for themselves or someone they care about.

Thanks to Facebook memories, I was recently reminded that we have been hiring, scheduling, and managing caregivers for over nine years. I say “we” because it’s really a team effort. Nine years ago, I had made the decision to leave the agency I was with for only eight months due to major safety concerns. We had reached other options, and, as is still true today, we learned that doing it ourselves was the only option if I wanted to continue to live in my apartment. I fully admit, I had no idea what I was getting into. I had talked with a couple of friends who had been doing it for awhile and they gave me some tips. I have no HR or management degrees, but, oh, did I learn quickly.

Everything from creating an ad, to finding free websites to advertise on, to doing background checks on CCAP, to interviewing hundreds of people, to completing thousands of pages of paperwork, to waiting weeks on end for someone to be approved only to have the person not responding when you try to setup a time for training, to having people not show for training and shifts, to creating schedules with several people, to having people quit or call in with little to no notice… The list of things that is truly endless. To say I’ve learned a lot in nine years is a huge understatement.

One of the most important things I’ve learned is how to do what’s best for me. That sounds really selfish, but, when you’re reliant on caregivers to literally help you live your life, you have to be very specific about how you want to live. Of course, it’s a very fine line because you can’t be too picky or nobody is going to want to work with you. On the other hand, though, it is YOUR life. For both the client and the caregiver, sometimes it’s hard to remember that.

With all the Medicaid stuff going on, there’s a meme going around on social media saying, “I do not live in your workplace. You work in my home.”  This quote couldn’t be more accurate. My workers are in my home to help me live MY life. The timing of this meme was pretty ironic for me personally. 

I like to think of myself as a pretty patient and understanding person. Even when caregivers have no similar interests and have very different personalities than I do, I can usually find common ground somewhere—at least enough to have a cordial working relationship with the person. As I’ve discussed in past entries, I’m not going to be best friends with every caregiver and that’s perfectly fine. Having said that, when a caregiver has completely different interests and doesn’t respect your requests after being asked repeatedly, you are bound to run into some problems. This is what happened recently. The particular worker was with me for just under six months, and I really tried to make it work. She was punctual and able to physically do the work; however, not only did she have nothing in common with me, she said some very inappropriate and bizarre things. In addition, there were other concerns with things like privacy, respecting boundaries, and not following directions. It was really affecting my mental health. Each counseling session, we’d spend at least half the hour talking about how to deal with her.  It came to a point where I knew I had to let her go for my own sanity.

I had dismissed people based on attendance (basically when they stopped showing for shifts) before, but I had never let someone go for other reasons. I talked with a couple of people and my mom and I came up with a plan. The obvious first step was to make sure I had enough people to cover all of my shifts. It took a few months, but I finally had enough people to cover the majority of the shifts this month. Then, my mom and I came up with an outline for the conversation with the person. I did feel bad knowing how this would affect the person, but I had to do this for myself. Again, I’m not in HR, so I had no idea how this was going to go. It went as well as expected. It wasn’t a pleasant experience, but it had to be done.

That was a first for me and something that I never thought I’d have to do. But, know what? After doing it, a huge weight was lifted off my shoulders. I definitely learned things from the experience and will apply what I’ve learned in future experiences. Never in my wildest dreams did I ever think I’d be hiring, scheduling, and managing caregivers this long, but here I am. I know that my years of doing this are really numbered, so I’m really trying to relish the remaining years. Sometimes, we are forced into doing things that we have no desire to in order to accomplish our hopes and dreams or help someone accomplish theirs!

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

“I can’t wait to go home and relax.” Whether it’s after a long day at work or returning from an exotic vacation, home is usually where most people can go to relax. Home is generally where people feel most comfortable. It’s a place where people can decompress from whatever is going on in their lives. Home should be known as a safe place people can go when things get tough. It should be a place where people want to be. The concept of home looks different for everyone, but it’s a place where people can resort to. That said, there are many different reasons why home may not be the sanctuary that it’s intended to be. One reason may be because you rely on caregivers who are constantly coming and going in and out of your home.

“I’m sick of being just a job to some people,” I recently said to my mom one night. In the past, I’ve written quite a few journal entries about various topics related to caregivers. I don’t think I’ve done one on different types/personalities of workers, though.  I’ve explained that my so-called “caregiver journey” started out in late elementary school or junior high. I just had someone for an hour or so after school. It was through an agency and it was mostly middle-aged ladies. I was young and, even though they weren’t, they were like babysitters to me. They were sweet to me and helped me with what I needed until my mom got home from work. Although at the time I didn’t realize it, cares at UW-Whitewater were a very unique situation. As I’ve explained, most of the workers were students as well, so during my shifts, it was just like hanging out with a friend. The few workers who weren’t students were sweet ladies. For the most part, I didn’t run into problems with caregivers in college either. It wasn’t until I moved to Oshkosh that I realized that I was going to have to deal with caregivers with a variety of different personalities, attitudes, and work ethics.

In the almost nine years of hiring my own caregivers, I’ve had workers with a plethora of different personalities, attitudes, and work ethics. While I understand that I really am a job to people, it can be really exhausting and challenging to have people who simply don’t care about anything other than getting the “job” done. This is the type of person who is almost always a few minutes late for their shift and neglects to text me. They do the tasks they are supposed to, but that’s it. They want to get everything done as fast as possible so that they can spend the rest of the time doing what they want (usually be on their phones or computers). When I ask them for assistance with something out of the ordinary, they do it, but often not without attitude. They usually don’t say anything, but their body language often expresses negative attitude. There’s often very limited interaction with this type of person. I’m just a job to them.

On the contrary, I’ve had many workers who are overly anxious. This type of person is overbearing and he/she feels the need to share way too much information about their personal life. They also want to know everything about your life and will go to extreme measures to find out what they want to know. These are the type of people who will talk your ear off even when it’s obvious you’re busy doing something. Some make really bizarre inappropriate comments about very personal matters they have to assist you with. These people often don’t have a filter and will say what’s on their mind regardless of the circumstances. They feel the need to fill silence all of the time.

Currently, about half of my workers fit into one of these two categories. It wears me out to deal with people on both ends of the spectrum day in and out. It’s exhausting to have someone who is so nosey and talkative all day long, but then then have someone who is just in it for the money and rushes through everything here at night. It’s really challenging to constantly work with both kinds of people in your own home. In this day and age where caregivers are so few and far between, I can’t be too picky. I have to do a risk and benefit analysis of each situation.

Thankfully, the workers who I consider friends kind of balance it out at the moment. Every few days, I get a much-needed reprieve when one of them has a shift. I, of course, also have my support system which I heavily lean on. My counselor suggested that I start making a list of all the crazy and bizarre things that caregivers say and do. My mom and I have done that and it makes me laugh which is what it was intended to do. At this point, with all the crazy bizarre caregiver problems I’ve had over the last few years, my counselor is trying to get me to use humor to deal with some of the stress of it. It’s working a little bit.

For me, my apartment is still a place I call home. There are times when I feel like I can relax and enjoy decompress from whatever is going on. It’s the place where you feel most independent. However, at times, home can be a really challenging place to be.  Depending on assistance from caregivers, has forced me to learn how to work with all kinds of people. Albeit, extremely difficult at times, it’s a great skill to have!

***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.