As the saying goes, it’s okay to be different. Whether it’s referencing a hairstyle, an ethnicity, a sexual orientation, or one of the millions of different characteristics people have, the notion of being different has been supported in this country for many years. A slew of legislative laws have been passed to protect and support people who are considered different from the norm. A few months ago, I wrote a journal entry about going against the norm. I talked about how it was okay to be different. While in some aspects, people choose to be different, in many aspects, people don’t have a choice. Disability is one of those notions that people can’t control.

Diversity. Equity. Inclusion. Those three words have made almost every news headline across the country the last few weeks. The new administration has made it blatantly clear that DEI will not be part of their agenda. In fact, they have already made sweeping changes. Within a day of the switch several webpages with vital information were taken down. Within days, a freeze on federal programs caused mass confusion. It was later blocked by a judge, but the anxiety for people who are in minorities is palpable right now. Furthermore, after a tragic plane crash, the President blamed people with disabilities without any proof that anyone with a disability had anything to do with it. That caused more uproar in the already on edge disability community.

While I am not going to share all of my thoughts on this, I will say that I think it brings up some deep questions as a country. The first and biggest being is it really okay to have a difference from the norm? Right now, in my opinion, the answer to this question is up in the air. Of course, everyone is going to have opinions about everything, and the idea of democracy is that everyone works together to make this country what it is. In order for that to happen, people have to have an open mind and be receptive to the idea that people have varying needs.

The second question is whether or not we have leaders in government who accept and support people who don’t fit the cookie cutter norm? In my opinion, the answer is some. There are numerous leaders in government who are supportive of the diverse needs of people in this country; however, there are some who are not. It makes it very tough for a country to run smoothly when you have leaders who don’t believe in diversity, equity, and inclusion.

 As a person with a significant disability who relies on federal programs to literally survive, it’s an unbelievably scary time. Hearing that Medicaid could have significant cuts or potentially be defunded is unfathomable. Quite honestly, many people like myself can’t even imagine receiving less support than we do now and still lead the productive lives we have worked so hard to achieve. I don’t even want to think about what my life would be like without Medicaid. The truth is that I’d likely be in an institution.

To have leaders of the country not think that any person with a difference isn’t worthy of leading a successful life is infuriating. In my opinion, people who are in charge of this country should believe that every single person in this country is capable of leading a successful life. Of all people, people in leadership roles shouldn’t judge anyone—especially publicly.

While I can’t speak for the disability community as a whole, I will say that, personally, what has transpired the last three weeks in this country has just refueled my desire to advocate. I feel like I have no choice but to. The quality of my life is on the line!

***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.

“You don’t know what you don’t know.” This common phrase is used for a plethora of situations when people don’t know a variety of information.  Whether it’s learning about a different culture or figuring out how to fix a car, there are millions of things that people learn.  Learning something new can bring on a whole range of emotions.  It can be fun and exciting, but it can also be difficult and frustrating.   Some information is readily available and easy to access; however, some isn’t easy to find. Oftentimes, information regarding services and benefits in the long-term care system can seem sparse and confusing. 

About two years ago, I wrote an entry about trying to figure out what benefits I was eligible for.  My financial situation had just changed because a parent had just started collecting Social Security and I became eligible for the Disabled Adult Child (DAC) benefit. As the title suggests, it’s an income benefit that adults with disabilities can receive when a parent starts receiving Social Security.  I’m not going to get into all the specifics of it because honestly, I don’t know them, but it was challenging to figure out because information wasn’t readily available.

Two years later, my parents and I found ourselves in a similar situation of trying to figure things out. This time it was because I became eligible for Medicare starting in January because I have been receiving the DAC benefit for two years (again, I don’t understand the reasoning behind this but that’s what we were told).

Admittedly, I know very little about insurance things, but, in October and November, commercials started running about advantage plans for Medicare.  We started hearing about dual eligible special needs plans that were being advertised.  We knew Medicaid would become secondary, but we had no idea if I needed an advantage plan.  In late November, my parents started making calls to their insurance guy.  They explained my situation and, very fortunately for us, the guy was super nice. He was honest with us and said he didn’t know.  He suggested that we contact the ADRC.  This was such a class act because he could have easily just had us sign up for an advantage plan and take the commission on it.  If he would’ve done that, it would’ve been a disaster.  My mom has been in touch with the benefit specialist at the ADRC and she has been super helpful. Due to needing to see all the specialists and getting infusions for my baclofen pump, I’m best to just have Medicare and Medicaid with no advantage plan.  Whatever Medicare doesn’t pick up, Medicaid will. I know others who have disabilities have to worry about MAPP premiums based on income, but I don’t have those circumstances—I’ll probably always be eligible for both benefits without premiums just due to my situation.

With Medicare now being primary, I needed to be enrolled in a drug plan for my prescriptions. Again, we had no idea how any of this worked.  The lady from the ADRC told us to create an account online and I’d automatically enrolled in a drug plan.  I created an account, but I wasn’t enrolled in a plan until a few days after the new year. That took a few phone calls to figure out that it takes a few weeks for that information to appear in my account. In fact, just this week, I finally received information about the drug plan in the mail this week. For someone who relies on multiple prescriptions, it was very nerve wracking not knowing how my medications would be paid for. 

Then, when my DAC deposit came in for January, it was less than what it had been.  I logged into my Social Security account and realized that money had been taken out to pay for my Medicare premium. That didn’t make sense to my parents and I because I had been on Medicaid for years and I’ve never had to pay for anything.  It didn’t make sense that I would have to start paying now.  I tried reaching out to some of my friends who have disabilities, but everyone’s situation seems to be a little different. My mom tried calling Medicare (and was on hold for an hour) only to be told that we needed to call Social Security (which was another hour wait).  They told us that we needed to call Medicaid. Instead of spending an hour waiting on the phone, my mom called the benefits specialist to see if she knew. Luckily, she did. She told us about another program that I qualify for and will be automatically enrolled in. It turns out that Medicaid will cover my Medicare premium in my circumstances. The system is just backlogged and, once it catches up, I’ll be getting reimbursed. Again, I qualify for this specific program based on my personal income. Everyone has a slightly different situation.

It’s frustrating for me because I’m not able to call these places myself. Although more and more financial and insurance places are creating online options to communicate with people, many government agencies still don’t have email or online portals for people to ask specific questions. Due to this, I’ve had to name my parents as authorized representatives so that they can talk to these places on my behalf. While I’m thankful that they’re willing to do this, it’d be really nice to be able to do some of these things myself—especially knowing that the technology is available to make it happen!

I don’t know how people can be expected to figure all of this insurance stuff out on their own when there’s no communication as to what is supposed to happen when.  As I’ve said in previous entries, I feel like my parents and I have lots of connections and are pretty “in the loop“ about a lot of disability related things, but this isn’t one of them.  We feel like we missed an important bulletin or something with this, but, in reality as far as we can tell, we haven’t. We’re trying our best to figure this out and make sure that I’m in the right programs to get what I need.  The information is available if people know where to go for it, but it isn’t easily accessible for the average person.   

Circling back around, the saying is true: You don’t know what you don’t know. With some things, people may be okay with not knowing everything; however, with other things, people have no choice but to go to extraordinary measures to obtain the information they need to figure things out. It’s said that continuing to learn new things is good for our minds; I guess that’s part of 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.

A faulty appliance. An event that flopped. A trial of a service that didn’t work out. A test-run of something that failed. There are all sorts of situations where something didn’t go as planned or hoped. In most scenarios, the problem can be fixed or there are other options available. When something doesn’t work out as one expected or hoped, it can be frustrating. Regardless of what it is, people usually aren’t happy about something going wrong. Everybody feels that way, and people with disabilities are no different.   We experience the same emotions everyone else does when things don’t go right.

In my journal entry last month, I explained how two big life changes were happening at the same time—I was moving into a new apartment and I had started with a care agency. The move went well and I absolutely love my apartment. Unfortunately, I can’t say the same for the agency. Going into it, I was prepared for challenges because I had gone through this process a couple times before.  The last two months were simply put, a nightmare.

As I previously mentioned, I was moving from part-time to an agency covering nearly full time, with two eight hour shifts. In early September, the agency promised to staff 16 hours daily, and this was to begin the first week of October.  A budget amendment had to be completed for more supportive home care hours, and this took time to get approved. Then I had to be rescreened for personal care hours.  This was a huge waste of time because, I had to be rescreened for the services I already had….hoops to jump through in this process.  Meanwhile, the agency was posting and hiring people specifically for my cares. Their plan was to hire four people, two on day shifts and two on afternoon-evening shifts.  Needless to say, that never happened.  We set up a training day for three people, only two of whom showed up.  Looking back, that should have been the first red flag. The plan was to have people hired to become “trainers of new staff.” We finally figured out a start date, and at that time, I was asked to release all my old faithful aides, some of whom had worked for me for over seven years.

Now to the staff that was hired.  The two initially trained were very capable and did have some experience, however we shortly found out that one was due to have surgery as well as going on vacation and the other had no way of getting to my place on time.  The third person hired had experience but I was forced to report her for hygiene issues and both she and I felt that she was not able to handle my needs.  Next, the agency was going to try to fill shifts with two people who had residential experience, but were only going to be fill-ins once in a while.  So, in the first two weeks starting, they only had two people, and only two days were fully staffed of those 14 days.  This meant that my parents came up there daily either to fill those shifts- they even stayed overnight a couple times due to consecutive days not being filled.  Admittedly, I was ready to switch back after a day or two, but we felt we had to give them a chance and at least a month or month and a half to prove to us that they could do this.  There were literally over a hundred phone calls between my mom and the personnel director as to what was going on each day. The next three weeks were no different.  I would go to my parents’ home when the agency couldn’t fill shifts, so in that time, only two more days were completely staffed.  Therefore, in a bit over a month, only four days were staffed, and either my parents came up or I would go to their home. The final straw was when one of the two initial hires called in sick four nights in a row, and they couldn’t find anyone to staff those shifts. Enough was enough, promises made were not kept! My parents and I made the decision to dismiss the agency and to go back to hiring our own people.  Even though we knew it would be a lot to go back, we all slept better that night, knowing we were back in control.

Basically, we knew this would be like starting all over again, but I didn’t realize how long it would take to switch back.  Everything from getting the personal care screen released from the agency to completing a new rescreening, to getting doctor’s orders, and budget amendments- it’s been another month of waiting. 

I contacted my old workers, and, thankfully, a couple were willing to come back.  Now, we are in the process of interviewing and hiring new people again.  I’m hoping by early January that I’m able to stay and enjoy my new apartment for more than two nights in a row!

What did we learn from this fiasco? When something sounds too good to be true, it probably is. Second, the long-term care system continues to have roadblocks whether you’re working with an agency or hiring your own aides.  Third, be grateful for the support system you have with family and/or friends! Finally, this experience just amplifies the need to continue to advocate for a better overall system in 2025 and beyond!

***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.

Getting married. Having a child. Switching careers. Moving to a different state. What do all of these things have in common? They are big changes to a person’s life. Any monumental change in life usually causes some sort of stress in people’s lives. The anticipation of whatever it is can bring on all sorts of emotions such as excitement, fear, and nervousness. For people living with disabilities, the monumental changes may sometimes look a little different, but we definitely still experience them. Change is hard for everyone—no matter what your circumstances are.

What happens when two major life changes happen at the same time? To put it bluntly, it’s pure chaos! For those who know me personally, they know how hectic the last couple months, actually years, have been for me. I’m not going to go into everything that has happened, but I’ll discuss the two big things that have been going on the last two months. To the average person, these two things probably won’t seem like a big deal, but, in my world, they’re life-changing. By the end of November, my entire life will be totally different than how it was at the beginning of October. Let me explain.

A little back story. Over a year ago, for various reasons, doctors recommended 24-hour care for me. There was no way I would be able to staff that by myself, so we had to find an agency. Really long story, there’s only one agency in my area that could possibly take me on. I had been on their waiting list since last October. We’d check in with them every few months to see where I was on the list. Well, between July and September, my care team (who I hired) basically fell apart. I unexpectedly lost five or six workers starting in June, and it became very apparent that something needed to change. I had a couple of great workers who stuck with me and tried to fill as much as they could, but we just couldn’t continue doing it. I was at my parents most of the time. We contacted the agency, and we finally connected with the right people and found out that that they were ready to take me on. The agency would staff 16 hours to start with, so I had to get a budget amendment approved which was a process in and of itself. I had to let the workers I still had know what was going on. That was a hard thing to do because some of them became good friends, but, thankfully, they understood. The original date the agency had given us ended up not working out for them, so I was at my parents another week while they supposedly straightened everything out.

I’ve transitioned to different care agencies or models a couple times before, so I knew what to expect and how rocky things would probably be. To say that it’s been an adjustment would be a huge understatement. Starting with all new people is hard –period. I don’t like using this limitation often, but, when you aren’t able to communicate verbally, it adds another whole layer. I have step-by-step instructions for everything I need done, but there are many in-the-moment things that can’t be explained in writing. In my case, hands-on training is an absolute must. My mom did a whole day training with two of the workers, and the intention was for those two workers to train others. So far, that hasn’t been working too well, but we’re really trying to give them a chance. At the time of writing this article, I’ve been with them for about three weeks, and my parents have had to come up about 95% of the days for one reason or another. It’s been pretty crazy to say the least, but things have gotten a little better over time.

Having someone with me all day has been an interesting adjustment as well. For years, I was by myself from 9a.m. to 4p.m. I tried to feed myself finger foods for lunch and didn’t use the restroom for about nine hours. Obviously, this was a huge reason why doctors recommended more care. It’s been an adjustment, though. Having someone at my apartment while I work is new to me. I’ll probably write about in detail in another entry, but, as challenging as it is, it’s also so much healthier and safer for me. In time, once things get settled, I hope to be able to go into the community a lot more since someone will be with me all the time. Right now, having an agency is a lot more stress than doing it on my own, but, eventually, it should be a lot less stressful for my family and I. That’s the goal.

I’m also moving in less than two weeks. In a previous entry awhile ago, I explained how I was on a waiting list for a different apartment for over two years. Well, low and behold, we learned that my name was at the top of list again. This time, we were able to do the intake meeting, and, about a week later, I received a call saying that three apartments were open. My parents and I set up a time to look at them. We looked at all three to determine which one would work best. We thought one would work pretty well, so I took the leap and signed the contract. Now, moving is stressful for anyone, but, when you need accommodations, it adds another level! This apartment building has an inner doorway and tenants have to buzz people in using an intercom system. There is an intercom in each unit, but the problem is that I won’t be able to reach it from my bed in the morning to let my caregiver in. We are trying to figure out the best solution to that. An electronic door has to be installed on my actual apartment as well. Among other less major things, it’s a lot to figure out in a short amount of time.  My current apartment still has a lot of issues, and the new place will be much safer and less stressful for me. I’m beyond excited to move, but it’s a lot of stress trying to figure everything out.

Do I wish both major changes wouldn’t coincide with one another? Absolutely. The amount of stress that this has put on my parents is palpable, but that seems to be how life works—everything happens at once. I’m so grateful that my parents are able and willing to help me figure everything out. I’ll write about both of these changes in more detail in upcoming entries.

“Next year will be your year,” friends kept telling me when I confided to all that has been going on the past couple of years. Moving and getting cares figured out have been on top of my personal to-do list for awhile. Due to other things that have happened in my personal life, I won’t be able to say that 2024 has been the greatest year; however, I’m hopeful that this is the start of a great stretch of good things to come for me and my family!

***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 hug from your child. A text message from your teenage son saying “I love you, mom.” Going to your daughter’s soccer game. Taking your kids to Disneyland. Having your little one run to you when you pick them up from school or daycare. Watching your child giggle at something funny. What do all of these things have in common? These are events that commonly bring adults my age joy. Most parents don’t even realize how often they get that little jolt of joy, but it usually happens multiple times a day. Kids have a way of bringing a little joy into the world even on your worst days. What happens when people aren’t able to have kids? At times, it’s not easy to do, but speaking for myself, I try to live vicariously through my sister and friends who have kids. For people with significant physical limitations, interacting with small kids is always a little bit of a gamble.

“Stacy,” with emphasis on the C ("Stay Ceeeee"), my almost two-year-old nephew squealed over FaceTime while his four-year-old brother anxiously waited to show me the school bus he had just drawn. With that five-minute FaceTime call, no matter how bad my day had been, it was made! A few years ago—I guess about four years ago now—I wrote about the yearning to be a mother. My sister had just had her first baby and I had become an aunt. I didn’t know how my nephew would interact with me. I didn’t know what to expect. Would he be scared of me? Not being able to talk or physically take care of him like many aunties do, how could I form a relationship with him? What would that look like? Questions like these swirled in my head.

Four years later and another little adorable nephew (if I do say so myself) added to the mix, I can tell you that those two little boys are the apples of my eye. Being an aunt is awesome. Like with some of my friends’ kids, since they never knew any different, my nephews just know me as Aunt Stacy. Do they realize I’m a little different than most people? Of course they do. Honestly, I think they realized something was different about me when they were just a few months old, but they’re still too young to articulate the questions.

My four-year-old nephew may be starting to ask questions about me to my sister and brother-in-law, but, so far, in front of me, he hasn’t really asked about why I’m different. I know he will and I want him to ask all the questions he has. Of course, the depth of our answers will depend on his age. For a couple years, telling him that I was born this way will be sufficient for him. When he gets older, we’ll introduce the term cerebral palsy and explain what it is. Will we ever share my birth story with him? Probably eventually way down the road, but we’ll wait until he asks.

Are my nephews afraid of me? That’s a difficult question to answer. When it’s been a while since they’ve seen me in-person, when they initially see me, they often step back and shy away. While I understand that they’re just not used to seeing someone with a significant physical disability, admittedly, it stings a little. Usually, with some prompting and coaxing from other adults, the boys warm up pretty fast and I can get a fist bump or a high five. If I’m around them long enough, I sometimes can even get a hug! It just depends on the scenario. I know this will get better with age and they’ll be less and less timid.

While I may not be able to do traditional things aunts do like babysit or take them on fun adventures, I continue to find ways to interact with my nephews. Whether it’d be giving them rides on back of my wheelchair, having them help open my birthday gifts, or giving them high fives, I cherish every little interaction I have with the boys because not only does it fill my heart with joy, I also know it helps them understand who I am. Right now, they are at the age where ramps are pretty cool, so they love it when I come visit because my sister and brother-in-law set up a portable ramp so I can get in the house with my power chair, and the kids love riding their bikes up and down the ramps.  They also enjoy running up and down the ramp in our van. Things like this are unique to having an aunt who has physical limitations.

Will my nephews be accepting to people with disabilities because they have me in their lives? I can’t say for sure, but I hope so. Will my relationship with the kids be different from the typical aunt? Yes, but know what? That’s okay. I know the exorbitant amount of joy they bring to my life; I only hope that I can bring a jolt of joy to 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.

Can we go out for dinner? Let’s meet for lunch. Can we meet at the park for a play date? Let’s take the kids to the museum. Want to meet at the beach? What do all these things have in common? They are things peers my age say to one another. Socialization changes as we age. In our high school and college years, kids pretty much live life around their social calendars. Meeting up with friends is top priority when people are in their teens and early twenties. After college, people often start their careers and find their significant others. During that stage of life, people still socialize with friends, but it’s often as couples. After a couple years, it turns into families meeting up to do something with the kids. Occasionally, parents have “date nights” with other couples, but, for the most part, socialization for people my age usually revolves around couples events or families getting together. What happens when you don’t have a significant other and kids, but, yet, want and need to socialize with friends? People with disabilities often struggle with this. Not only do many of us have physical barriers such as transportation and needing caregivers to assist us, to deal with, we often face psychological issues. When you don’t have a significant other or a family of your own combined with having physical barriers, it’s challenging to find opportunities to socialize. You often have to be the one to initiate and plan the gathering.

When I started college at UW-Whitewater, I wasn’t even thinking about how I’d make friends or socialize because I had so many other logistical things (cares, classes, accommodations, etc…) to worry about. As I’ve discussed in previous entries, I made friends in college just by hanging out with people. Back then, I had five care shifts a day, so I potentially hung out with five different college students a day. While we probably were supposed to, I developed friendships with most of them, and they introduced me to their friends. Before I knew it, by the second or third week of my first year of college, I had a bunch of new friends and was rarely in my room on weekends because I was hanging out with people. I didn’t realize it back then, but, looking back, it was really neat because I wasn’t the one initiating it most of the time. People asked me to do things.  To be honest, a lot of the time, my care shifts wouldn’t be at the scheduled times because we’d just be hanging out and my friends would just help me whenever I needed it. Obviously, I tried to be cognizant of their time and I tried not to “use” them, but it wasn’t a big deal to them if I needed something outside of my normal shift time. Because of this, I truly felt like a “normal” college kid because I was with my friends all the time. I socialized just like everyone else did—I was extremely lucky to have amazing friends!

It wasn’t until after I graduated from college that I realized just how difficult socializing as an adult was going to be.  There are several different factors that contribute to this. The biggest factor probably being that people are busy. After college, most people start their “real” lives. Most of my friends started their careers, found their significant others, and started families. This is the normal progression of life. Do I still see them and talk with them? Of course I do, but it’s not on a regular basis. Understandably and rightly so, their priorities have changed.

Another big factor is that I lead a totally different life than most of my closest friends. While they’re worrying about their kid’s next t-ball game or gymnastics practice, I’m worrying about if my care shifts are covered for the next day. I don’t use this example to provoke pity or anything: rather, it just shows how different our lives have become. Getting together is just different now than it was when we were younger. Instead of meeting for dinner and drinks at a sports bar, we meet at a park or zoo, so the kids can play.

Transportation and my care schedule also play a big role in my ability to socialize. None of my close friends live in Oshkosh, so either they have to come up here or I have to find a way to get to Fondy or Milwaukee where they live. This often presents quite a challenge because understandably my friends aren’t able to make the trip very often, and it’s difficult for me to find a ride out of town.  I have to coordinate caregivers as well. While most of my friends have helped me out with many of my personal cares in the past, I don’t feel like it’s appropriate to have them help me when we’re just hanging out—especially now that they have kids. When we get together, I have to make sure that I have a decent caregiver with me who not only will be able to physically, but also will be able to assist me with keeping the conversation going. Don’t get me wrong, my friends know how to communicate with me, but sometimes it’s nice to have a person with me who knows me so well that she can help fill in the gaps rather than waiting for me to type it out. Needing a caregiver with me really limits my availability for hang out with friends currently.

Having said all that, in late June, my counselor challenged me to get together with friends a couple of times in July. Due to some different circumstances going on, she knows that I can’t travel to see friends like I often do in summer. This meant I’d have to ask people to come to Oshkosh. As I’ve said in previous entries, I’m very uncomfortable doing this because I hate obligating people. I feel bad that I can’t just meet my friends wherever whenever. In order for me to participate in a get together with friends, I have to plan it weeks in advance so that I have all of my ducks in a row, so to speak. It’s challenging, but know what? I did it. Thanks to my amazing friends, I have four separate get-togethers planned this month! I’m so excited! Did I overdo it? Perhaps, but I’m so looking forward to seeing so many friends.

Socialization is a crucial part of life for everyone. There are many different barriers that can make it hard; however, as long as you have great friends like I do, no amount of roadblocks will ever prevent you from seeing your closet friends!

***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.

Batman. Superman. Spiderman. Elsa. Belle. Monana. Whichever fictional character it may be, kids often idolize a specific character starting at a young age. As kids get older, those characters switch from fictional people to real-life superstars. Often, teens and young adults have obsession over a famous celebrity or athlete. Whoever the famous person may be, people often look up to her/him because she/he has had a positive influence on their lives. Celebrities and famous people are often referred to as superheroes. Whether we admit it or not, every single person in the world likely has a superhero that they look up to. People with disabilities are no different. Our superheroes may be different than the normal celebrities people commonly think of, but that’s because we often have a different perspective on life.

A few years ago, I wrote about the heroes in my life. I talked about how my family and friends are my heroes. I explained how I consider the assistant who I was blessed to have from second grade through 12^th grade to be one of my heroes. All of my family members, especially my mom, dad, and sister, are my forever superheroes because they’ve rallied around me and supported me literally since day one. I wouldn’t be anything without their continued steadfast love and support.

While that journal entry still holds true today (and always will), a few years ago, I was blessed to meet a friend who has turned into another hero of mine. Let me preface this by sharing that I’m utterly embarrassed to admit that in junior high and high school, I deliberately avoided students with intellectual disabilities. This was for obvious reasons---I felt the need to prove my intelligence and wanted to desperately fit in. Looking back, I can give myself grace because I understand why I did it, but how ironic is it that 20+ years later, I tell you that one of my heroes is someone who has an intellectual disability? How experience and education can change one’s perspective!

I first met Cindy Bentley about ten or eleven years ago with I was appointed to the Independent Living Council of Wisconsin. Our paths have crossed hundreds of times since then as we work on many of the same disability advocacy things together. Somewhere along the lines, we became friends. It’s not my place to share all of her story, but this amazing woman is the definition of resilience and self-determination. She had a very rough beginning and spent many years in a state institution.

Recently, I was honored to have been able to attend an event celebrating the 40^th anniversary of Cindy not only living but THRIVING in the community. She has done far more than most people will do in a lifetime. She is the executive director of a statewide disability organization and has done more than she even realizes for the disability community.

What I admire most about Cindy is that she’s not afraid to speak up when she doesn’t understand something. It doesn’t matter what the event is or who is there, she will speak up if she doesn’t understand what’s being talked about. She will also go to bat for people who are being mistreated or aren’t getting the support they need. She’s not afraid to make waves to create change.

Admittedly, while I was at her celebration, I had a moment where I sat there looking around the packed gymnasium of people (I probably knew 75%) and just thought how amazing it was that all these people came together to rally around this one amazing individual to help her succeed in the community. The saying, “it takes a village to raise a child” is applicable to adults as well. As I’ve said in past entries, I know that I have a village of people who support me. It was incredible to see Cindy’s village come together to support her.

As we were driving back from the event, I said to my mom, “20 years ago, I wouldn’t have been caught dead at something like that, but that woman has taught me more than any college class ever did. I love her.” It’s really cool to see how perspectives can shift over time. It was really a special event.

I full-heartedly say that Cindy is a hero in my book. As someone with a significant physical disability, I look to Cindy to be reminded of perseverance and inspiration for whatever challenges life throws my way. I’m reminded that almost anything is possible if you put your mind to it. Thank you, Cindy, for being one of my heroes. Please always remember how loved you are!

***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.

Wearing white after Labor Day. Listening to Christmas music in May. Opening the car windows in the dead of winter. Marrying a person of a different race or different economical status. Dying your hair bright pink. Men having long hair. Women shaving their heads. Older people wearing exotic clothes. What do these things have in common? They are all things considered to be “out of the norm.” As a society, we have developed the idea of how things should be. I’m not going to dive into how the “norm” was created because frankly I don’t know, but when people don’t follow the norm, we, as human beings, judge. We judge because it’s different than what we’re accustomed to. People break the norm in many different ways. Sometimes, it’s out of spite, but oftentimes, it’s due to circumstance or the desire to be different.   Whether it’s race, gender, sexual orientation, disability, or another uncontrollable factor or factors, people who are in one or more minorities often face even more judgment when going against the so-called norm. Although, it has gotten a lot more acceptable for people to break the norm in today’s day in age, there’s still quite a stigma.

“YOLO!” (you only live once). That’s what I texted in my family’s group chat one recent Saturday night. Along with the text, I sent pictures of my new haircut. Anyone who knows me knows that I absolutely love experimenting with my hair. Over the years, I’ve pretty much had everything hair style you can imagine. Long, short, bright blonde, yellow, red, permed, you name it…the reason I love experimenting with my hair so much is because it’s one of the few things on my body that I have almost completely control over. The key word in the last sentence is almost. Since I’m not able to physically style it, I have to rely on others to do it. This can be very frustrating because it’s rare that people do it exactly how it I want it. Generally speaking, short hair tends to be easier, but it also grows out faster. In society, the norm is that females generally have medium to long length hair until they are senior citizens. Of course, many people go against the norm with a variety of hairstyles. My mom and dad pretty are traditional when it comes to hair. They aren’t a fan of anything bold or different. They love long hair on ladies. Over the years, when I’ve done drastic haircuts, they’ve playful teased me like most families do. They aren’t afraid to let me know they don’t like it and that’s fine. While I respect their opinion, it’s ultimately my decision.

Call it a midlife crisis, call it being bold, call it functional, call it whatever you want…this time, I wanted to go very short for my haircut. Whenever I schedule a haircut, one of my favorite things to do is to look for hairstyles online. Again, it goes back to that control piece—it’s something that I can control. I’ve been looking at a certain picture of a hairstyle for awhile and decided this would be the time that I go for it. I almost completely shaved my head and I can’t begin to tell you how much I love it. It was a liberating experience. It’s super easy to take care of and I honestly love the way it looks and feels. As I expected, my parents aren’t fans, but that’s ok. I absolutely love it and that’s what matters!

Being a woman with a physical disability who has her head shaved will bring on its own set of stigmas and that’s okay. I will be mistaken for a male, but I was with my last couple of hairstyles; I’m okay with that. Other wrong assumptions will be made because it’s against the norm and that’s totally understandable. As I explained in a past entry, assumptions are unavoidable-they’re a part of life.

Hairstyles aren’t the only thing that I tend to go against the norm on. I wrote a whole entry about this awhile back, but this issue seems to be becoming more and more front and center as the world transforms its norms. In recent years, it’s become the norm to refer to people with disabilities as “disabled.” While I understand that people with disabilities want to be seen as a community and take pride in having a disability, I just can’t bring myself to use the term. It’s probably really boastful for me to say, but I want to be seen as a person first. I know I’m now in a real slim minority on this, but I’m okay with that. I’ll probably always be against the norm on it, but that’s fine with me.

Having a significant physical disability puts me against so many norms as it is. In most cases, I don’t mind going against the norms. Yes, I know that may sound contradictory to things I’ve said, but I guess I don’t mind being different on my terms. Choosing to be different is different than being part of a minority due to uncontrollable factors of life. I didn’t choose to have a disability, but I can choose my hairstyle. See the difference? I’m choosing to be different by cutting my hair a certain way. That’s my choice.

Society has really transformed its norms over the last 30 years and that’s a great thing. The world has become more inclusive for everyone. Norms are always transforming, and, yet, they’re meant to be broken. It’d be a very boring world if everyone abided by the norms of society.

Will I shave my head again? Much to my parents’ dismay, I probably will. Going against the norm often singles people out. Often, when you go against the norm, it makes you stand out which can be good and bad. When enough people go against the norm on something, overtime, it often creates a new norm.  I want to challenge you to go against the norm on something you believe in or want to do. Be bold. Take a chance. Remember, YOLO!

***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.