$1.35 billon. That’s the amount of the recent Mega Millions jackpot. It has been all over the news because it has been awhile since anybody has won the jackpot.  It has brought up the question: what would you do with a billion dollars?  Obviously, everybody has a different answer to the question and there is no right or wrong answer.  Responses to this question widely vary.  While some people dream really big and have extravagant ideas, others are more conservative and think strategically.  It’s an interesting question for everyone to ponder.  For people with disabilities or those who rely on government programs, the thought of suddenly having that much money is almost daunting.

“It wouldn’t really be beneficial to me if I won the jackpot, “ I said to my parents a few years ago when one of the lottery games had an enormous jackpot.  My dad disagreed and said yes it would.  Since my parents and I always have the topic of my care on our minds, my dad explained that I could pay people decently to take care of me.  We could hire and pay people decent wages to stay with me around the clock (while I don’t need 24/7 care right now, I’m realizing more and more how nice it’d be to have someone around to help me with things all the time).  I agree, but I don’t think winning the lottery would solve all my care troubles.

What would I do with one billon dollars (ok, about 474 million after taxes)?  That’s a very good question.  It’s interesting to think about because while, yes, almost everything in my life would change, my needs wouldn’t.  I’d still need caregivers to assist me with all my daily needs, I’d still need accessible housing of some sort, I’d still need medical professionals and other specialists to help me with my medical and equipment needs...the list goes on and on.  Would I still be able to receive the services I need?  Obviously and rightfully so, I’d be off all government assistance, but how would that work logically?  Would I be kicked out of my income-based apartment right away? What would happen with all of my insurance things?  Having so many needs, would I even be able to get private insurance?  I’d be able to buy all the equipment, but would I still qualify for assistive technology support?

Now, I realize that even thinking about this is pretty silly—especially since I’ve never bought a lottery ticket—but, what is the first thing I’d do after winning the lottery?  After contacting my immediate family (and probably going out for a nice dinner to celebrate), calling and meeting with a lawyer and financial advisor, I’d begin notifying government entities to try to figure out how to move forward. Next, I’d have to figure out a place to live.  I don’t think there are too many accessible millionaire homes readily availability in this country, so I’d probably find a big condo in a big city and have it renovated.  Then, assuming I’d be off my long-term care support, I’d have to figure out how I was going to do my care.  Since I wouldn’t be limited by insurance, I’d probably seek out a nice home care (believe it or not, some do exist—it’s just that only accept certain insurance or private pay) to set up care.  I’d buy an accessible van and hire and insure drivers to drive me everywhere.  I’d have to figure out health insurance.  Due to having a significant pre-existing condition, finding insurance maybe challenging, but I’d be able to afford a hefty insurance plan.

What would I do?  Would I continue working?  Probably not—at least not for pay.  Would I continue to advocate?  I can’t imagine that I wouldn’t because it’s who I am.  After ensuring my family and I were set for life, I think I’d start donating my money.  No idea how this would be possible, but I think I’d figure out a way to donate money to direct care workers.

It’s impossible to fathom having that much money.  To most people, one billion isn’t really even a realistic number.  Suddenly having that much money would drastically change anybody’s life.  Persons with disabilities are no different; however, we might have some extra things to take into consideration. Being financially stable would definitely make life easier, but it likely wouldn’t solve all our problems. In some ways in may in fact create new ones.  While the odds of winning a big lottery jackpot are extraordinarily low, it’s fun to daydream about what life would be like as a billionaire! 

***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.

What’s your name? What’s your date of birth?  Please state your Social Security number.  Questions such as these are commonly asked when people are setting up appointments, participating in important personal financial meetings, or completing other personal business.  Most adults are able to answer these basic questions without even thinking about it.  In this day in age, we have to make sure it’s a legitimate source we’re giving our personal information to, but, generally speaking, if it’s a credible source, people are able to verbally say their personal information when asked.  People with disabilities and health conditions frequently have to provide personal information on a regular basis because it’s required in order to receive the services and supports they need to live a successful life.

“Please state your date of birth and Social security number,“ a lady from the Social security Administration said to me on a recent call to fill out the application for a benefit I’m going to soon qualify for.  My parents were on the call too—in fact, my parents setup the call and were going to do it for me because we thought we had setup my mom as a representative for me so she could speak on my behalf (due to my communication barriers).  It turned out that wasn’t the case.  My dad called me on his phone, put me on speakerphone, and my mom put the lady on her phone on speakerphone so that we could hear each other. 

After calling me, my parents thought that the lady would be able to ask me a simple yes/no question such as, “do you give your mom consent to speak on your behalf?” She eventually did ask that, but first she needed me to state my date of birth and Social Security number.  My parents tried explaining think I use a communication app and type everything out—at this point, I was typing something out on my communication app to see if she could hear it.  She could, so my parents explained that I could type out my birth date and Social Security number—it’d just take awhile.  The lady agreed to wait while I typed them out.  After that, she allowed me to give my mom consent to help answer the questions.

The application for this particular benefit was absolutely ridiculous!  Not only did it ask for all of my financial information, it asked about all of my health history and capabilities. My parents were able to answer most of the questions and I chimed in with my communication app when needed. It took an hour to complete the application.  It would have taken a lot longer if my parents hadn’t been able to help.

As I’ve discussed in previous entries, answering questions and having to tell people about your condition and limitations over and over isn’t easy--especially in this scenario where somewhere in the system there should be most of the information from previous benefit applications I’ve done.  While I understand some health conditions change frequently, cerebral palsy doesn’t really change too much. People don’t like rehashing what happened to them or what they can’t do.  It adds another layer to it when you need assistance completing the interview (yes, theoretically I could have answered each question by typing it out on my phone; however, there’s no way a person at Social Security would have time to wait—it’d literally take a full day to do).  Thankfully, my parents are able and willing to help me with things like this, but I’m sure it isn’t easy for them either to explain my circumstances—again, we try not to dwell on my limitations.

In an ideal world, applications such as this would be able to be completed digitally.  People would be able to fill it out on their own, do electronic signatures, and be able to communicate through an online portal if clarification is needed.  It’ll be awhile, but I think things will become even more digitized.  The need to answer those seemingly degrading questions about my circumstances will always be a part of my life, but I’m hopeful that as things become more digital, the need to verbally state personal information will decrease.  For some people, having things become more digital has been an inconvenience; however, for people like myself, it has been amazing—I can’t wait for more opportunities to be available digitally! 

***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.

Packing boxes. Cooking dinner. Studying for an exam. Stretching before a race. Researching an item before you purchase it. There are millions of ways that people prepare for different things. Many times, we don’t even realize we do it—it’s habit. Some people feel the need to prepare for things more than others. Some people can just wing things and have them come off seamlessly. Not always, but usually preparedness and organization go hand-in-hand. Most of the time, if someone is an organized person, they also feel the need to be prepared.

“I won’t agree to do this many things again,” I said to my mom in early September as I was preparing for the Self-Determination Conference. She laughed and shook her head because she knows that’s not true. She knows how much I absolutely love doing presentations and talking with others. Like in many years past, I was asked to participate in many different things at the conference this year. It started in June or July. People sporadically began reaching out to me asking if I would like to do different things. I always say yes, but there’s a caveat—I need to know what I need to present on as soon as possible. While people do their best to get me the information in a reasonable amount of time, it’s usually not an ideal length of time for me. While I understand that most people can kind of wing speeches and presentations without putting an enormous amount of time in it, that’s not the case for me.

As I’ve explained in previous entries, I use an app on my phone called Proloque2Go to communicate. I’ll be honest—I don’t use it right. I never have used communication devices the “correct” way. I’ve never been a fan of using symbols and sequences to communicate. I’ve always preferred to type everything out that I want to say. I believe it’s not only faster, but it’s also a much more accurate way of communicating—rather than using preprogrammed phrases, I type out exactly what I want to say. Having said that, typing everything out does take some time. For spontaneously communicating, it’s usually fine because the person who I’m talking with usually know to wait. However, for long presentations, obviously typing everything out spontaneously, wouldn’t work. It’d take way too long, and I wouldn’t be able to cover hardly any of the information that I needed to. To solve this conundrum, when I have presentations, meetings, or anything that requires immediate response (that has to be semi lengthy responses), I preprogram things on to buttons. 

Now, when I say preprogram, most people have no idea what that entails. Before I explain how I do it, I have to tell you that the way I do it is probably very unconventional, but I’ve found it’s what works best for me. When I first learn that I have a presentation or something, I immediately ask what I’m presenting about or for an agenda (if it’s a meeting). I then begin typing what I want to say out on a Word document on my computer using my eye gaze system. Depending on how long of a presentation it is, this often takes days. A 30-minute presentation is about seven pages typed just to give you an idea. Once I have the first draft typed out, I copy all of it into an email and email it to myself. I then create a page in Proloque2Go for the specific event. I then start creating buttons on the page. I go back and forth between Proloque2Go and the email app on my phone—I use my double-jointed thumb to select and copy each paragraph from the email and paste it in Proloque2Go. Each paragraph is a separate button and, depending on what type of presentation it is, I label each button. I then have to go into options for every single button, and select “speak immediately” (the default option is to have the text displayed in the display box in the app and that would add more things to push while I’m presenting). In addition to programming buttons for each paragraph, I put a blank button between each button that has content. I do this because I’m apted to hit the wrong button if they’re right next to each other, so I put blank buttons in as spacers to help me be more accurate. While I don’t have to label or change the options for blank buttons, I still have to program a space for the button in order for a blank spot to appear.

After I get all of the paragraphs programmed, I then have to play each button to make sure it sounds right. Many times, I miss a word or something isn’t pronounced right on the app (for example, in order to have it say my last name, Ellingen, right, I have to spell it ell in jen). When that happens, I have to go into the specific button, copy the text, paste it into the Notes app, correct whatever it is, re copy the corrected text, and paste it back into the button in Proloque2Go. The process continues until each and every button sounds right. Depending If it’s a long presentation, I label the buttons using the alphabet. After I’m done programming the speech, using the Word document I originally created, I label each paragraph with the correlating letter of the button. I print out the labeled document and put it in the binder, so while I’m presenting, I follow it and know which letter I’m on.

You may see why I like to be prepared. I actually have no choice. I have to in order to be able to do many things. I had 138 buttons programmed with content for this year’s conference which meant, because of the spacer buttons, I programmed over 300 buttons total! It was a lot this year. Ideally, I would have had more time to prepare, but I understand that when you’re collaborating with people, things can’t happen as fast as you’d like. It was a pretty stressful few weeks, but I managed to get everything done.

While I would love to be able to just wing a presentation or a meeting, I can’t. Luckily, for me, I’m an overly organized person. As I’ve discussed in previous entries, I don’t procrastinate on anything. I have to be almost overly prepared for everything in life—it’s just who I am. Most tasks take me at least twice as long to complete, so time is a crucial component in my life. I have to consider the extra time I need in all aspects of life and try to be as prepared as I can for whatever life has in store!

***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.

When a car breaks down, people get it towed to a repair shop and have it fixed. If it’s going to take a few days to get it fixed, people usually have the option of getting a loaner vehicle to use. When your furnace doesn’t fire on a cold winter morning, you call a repair company and they often can come fix it within hours. For the most part, if something isn’t working, people are now used to getting it fixed or finding a solution within at least a few days. Generally, people don’t have to wait weeks or months for a solution—that is, unless you’re someone with a disability. As I’ve said before, for many people who have different abilities, “wait” should be our middle name.

In previous entries, I’ve talked about how I wait for everything from getting up in the morning, to eating and using the restroom, to going to bed at night. Waiting is a major part of my life. There is a different kind of waiting that a lot of people with similar circumstances do that the general population doesn’t even realize. The wait for services or approvals. I’ve briefly touched on how it takes many months for needed equipment to be approved through Medicaid. In most instances for Durable Medical Equipment, if it’s a new need, the approval process is generally pretty quick because the person needs the piece of equipment likely due to a recent change in condition. However, if it’s a replacement piece of equipment, it often takes many months due to needing very specific justification and documentation. This is often the case with repairs and adjustments to existing equipment as well. If the piece of equipment is not functional for the person to use without repairs or adjustments, the DME provider usually tries to find a loaner or similar solution for the person to make-do until approvals come through. Many times, the make-do solution isn’t ideal for the person. This happened to me several years ago when my wheelchair stopped working while I was waiting for approvals for a new chair. Many times, people keep their old chair as backup for when something happens to their current one, but, unfortunately, my old one had stopped working. The chair was in the shop five or six times, but they couldn’t figure out what was going on with it. Eventually, they gave me a loaner. Fortunately, they had a similar power wheelchair sitting in the shop and they were able to jerry rig it to make it functional for me, but it was less than ideal. As I explained in last month’s entry, power wheelchairs are usually pretty customized, and, as great as my Assistive Technology Professional is, you can only customize a loaner to a certain extent. I ended using the loaner chair six or seven months until the new chair was approved, ordered and delivered.

Durable Medical Equipment isn’t the only thing that people with disabilities often have a wait for. For those of us who need specialized technology equipment to help us access the computer, there is sometimes several hoops to jump through and takes months to get the equipment you need. I’ve done an entry about my eye gaze system that I use to type on my computer. It’s much faster than typing on an adapted keyboard. I have had it for about three years now. My actual computer is about five years old. Low and behold, both the eye gaze and the computer recently started acting up. Of course, it happens when I’m busy preparing presentations for the Self-Determination Conference. Unfortunately, I can’t just go out and buy a new computer like most people do. Since I have so much specialized technology equipment I use, I need an assistive technology specialist to help me figure out what I need and to help me set it up. One of the only ways to get an Assistive Technology evaluation done is to go through the Department of Vocational Rehabilitation, DVR. Obviously, I use my computer for work, so DVR should hopefully be able to help me get an evaluation through a vendor.

The process of re-enrolling in DVR is pretty extensive. First, I had to reapply online which is a long list of questions you answer. The application asks all sorts of questions about your history and condition. Once you submit that, an intake person calls you and sets up a meeting. At the meeting, the person basically goes over the application with you and has you sign release of information forms to obtain medical records from your doctors. Once they gather your records, you’re then assigned a counselor. You then have to answer another series of questions about your employment history and capabilities. If you’re looking for employment, it makes total sense, but, in my situation where I already am happily employed and not looking for more work, these questions seem pretty pointless. After answering all of the questions, you have to have another meeting with your counselor to development your employment plan. Again, for people looking for employment, this process makes sense. However, for people in my situation who are just needing support and services in order to be able to continue working at their current job, it seems a little mundane. After you have your plan, you have to wait for DVR to find a vendor that will do the service. Depending on the vendor and service, there’s usually a lengthy waiting list. In this instance, once I finally have the evaluation, I’ll likely have to wait for the vendor to submit a report and recommendations to DVR and then I’ll have to wait to see what they approve. Then, it’ll take time to order and receive the equipment. Finally, I’ll likely have to wait for the assistive technology specialist to have time to come set everything up. Remember—all of this is just so I can get updated computer.

Meanwhile, while I wait for all this to happen, I try to make do with what I have and really hope that my computer holds on a little longer. My eye gaze system is going in and out—it works great for one day and then it doesn’t work at all for a few days in a row. When it randomly does work, I try my best to get as much typing down as possible (this journal entry is a perfect example—I’m typing this over a week before it’ll be posted because the eye gaze decided to work for a few hours). It’s just so much faster for me to type using it as opposed to my adapted keyboard.

As much as I’d love to just be able to buy new equipment or call a repair shop to have it fixed, there’s often so much more that goes into specialized equipment that many people with disabilities rely on. Sometimes, it gets frustrating having to jump through countless hoops and wait months for things that make life easier. Unfortunately, I don’t see many processes changing anytime soon. Waiting is incredibly hard, but, I have to say, it makes the time when you do finally get the proper equipment, much sweeter!

***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.

Adjusting the steering wheel in a vehicle. Getting a dress or tuxedo fitted for a wedding you‘re in. Adjusting the height of an office chair. Lowering the rail on a baby crib. Reclining or straightening a seat in a car. Raising or lowering shelves in a closet. What do all these things have in common? They are adjusted to fit needs of an individual. People adjust things to meet their needs all the time. While most of the time, adjustments are so minor that people don’t even realize that they’re making the change, some adjustments can have more of an impact. For many people with physical disabilities, making adjustments is a major part of our lives.

As I’ve explained in many of my previous entries, durable medical equipment became part of my life at a very young age. From strollers, to wheelchairs, to standing frames, to shower/commode chairs, I’ve had lots of different equipment over the years. Each time I need a new piece of equipment, most times I have to be evaluated by a physical therapist. Based on their evaluation, they make recommendations and justifications to the insurance company. When I was younger and receiving therapy regularly, it made sense because the therapist knew how my body worked because they had worked with me for a long time. Many times, therapists recommend things based off “proper” positioning. In other words, they make suggestions that would help people sit the “right way.”  This was the case especially when I young.

With my type of cerebral palsy, if my body is forced into a certain position, it will fight it hardcore. It’s been that way all of my life—it’s just how my body works. For years and years, therapists insisted on things like foot straps to hold my feet on foot pedals. Each time my feet were strapped down, not only would I loose fine motor abilities because my body was fighting so hard against the straps, I’d often push so hard against the straps and foot pedals, they’d break. This happened so frequently when I was a kid. I got so mad at therapists because they kept strapping my feet down. I understand they were doing it for my own good trying to get my posture as straight as possible to prevent complications later, but it, in my mind, it wasn’t worth it.

Another example was when I got a new wheelchair when I was in college. We had to work with a new Assistive Technology Professional (that’s what they call the people who sell DME now) Because the people we worked with before had left.  We still had a therapist who had worked with me for several years, so he was able to help with the evaluation. Well, long story short, this ATP had it set in her mind that I had to have this very customized seating system. I had to sit in this machine that took imprints of my buttocks and she insisted that I needed a pummel (hump) between my legs to prevent them from crossing. Let’s just say, that was my worst chair ever! The pummel didn’t prevent my legs from crossing, and it actually caused me more problems. The seating ended up being just awful and didn’t support my body. Needless to say, we were very happy when that ATP left!

The wheelchair I got after that one was a much better experience. I worked with a new ATP, and, although we had to work with a physical therapist who had never worked with me before (because by that time, therapy had stopped being covered by insurance), they both seemed to finally understand that function was more important than proper posture. Both of them actually listened to me and understood that being able to function to my fullest ability was more important than preserving proper body mechanics at this stage in my life. It was so nice to finally have people who didn’t push my body into ways that just didn’t work. No, my spine wasn’t straight and my legs were rotated in, but you know what? I could continue to do as much as possible independently, and that was what was important to me!

I just got a new wheelchair a few weeks ago. Back in February or March, I needed some minor repairs done on my old one, and, to my surprise, my ATP said he thought it was time for a new wheelchair. I only had had my wheelchair for about seven years. I had heard that Medicaid only pays for one every 10 years or so. He explained that the parts needed to fix my chair were starting to be discontinued, and the he thought he could write a justification that’d be approved by Medicaid based on my needs. Again, we met with another therapist who hadn’t worked with me before, but it worked out even better this time because my ATP had gotten to know my body over the years and he worked with the therapist to write the justification.

Medicaid approved almost everything they recommended this time—even the elevate feature. I picked out the color of the fenders (purple this time!) and it was ordered. The joystick was back ordered, so, after a few weeks, the company decided to send an upgraded one (it has flashers, headlights, and turn signals—it’s truly like a vehicle). My ATP assembled it and then made an appointment for me to come in. From previous chairs, we know that wheelchair appointments take awhile when getting a new one. The ATP has to have me in the chair and make adjustments according to my body and preferences. Again, we were all on the same page this time—it’s all about function and comfort rather than proper positioning.

We were at the wheelchair place for over five-and-a-half hours this time. Many of the adjustments and adaptations were unconventional. For example, while I don’t like my feet strapped to the footplate, I do need something really strong attached to the footplate that I can push my feet on in order to push myself back in the chair. It sounds really weird and it’s hard to explain, but it’s just one of the unique things I need. On my old chair, my dad took a piece of piping and bolted it onto the footplate. The ATP couldn’t find pieces like that anywhere anymore, so, what he ended up doing is taking two armrest pieces from an old scooter they had in the back, bolted them together, and then bolted it onto the footplate. It works great for me! Unconventional? Yes, but oh so functional!

My wheelchair is just one example of where, especially as I get older, functionality is way more important than the proper or customary ways. I’m learning this is true in almost every aspect of my life. From wearing tennis shoes to weddings, to having people break the binding on books so the book stays open for me (yes, I do that), to making sure caregivers don’t zip the zip lock baggies when they make my lunch so I can grab and dump the things onto the table, there are hundreds of unconventional things I do so I can be as independent as possible! As people say, “if it works, that’s all that matters!”  That statement couldn’t be truer in my 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.

“Don’t give up…don’t ever give up.” That was the famous quote from Jim Valvano’s famous speech at the ESPYs in March of 1993. He was a famous college basketball player and later coach who was accepting the Arthur Ashe Courage and Humanitarian Award.  Jim was courageously battling cancer. Variations of that quote have been used in many different ways in the years since his speech. It’s likely that everyone has been told “not to give up” on more than one occasion in life. Whether it’s for something as simple as a child scoring in a sports game or something as serious as a person with a terminal illness fighting to survive, hearing people say those encouraging words usually ignites a spark of encouragement in the person. The motto, “never give up,” is often heard in the disability community. For many people like myself, it’s a motto we choose to live by.

In an entry a few years ago, I wrote about how comparing our lives is human nature. It’s something we all do without even realizing it. While often comparing is a reaction to jealousy of someone’s circumstances or good fortune, it sometimes can be reflective and can make people realize how well they’re doing despite life’s obstacles. It can help people see what may be possible even when life throws you curveballs.

If you’ve been reading my entries, you probably have figured out that I’m a pretty ambitious person. Thanks to my family, growing up I was taught not to give up.  Obviously, there are some things that I want that are just not possible due to my circumstances, but, if there is a chance it could work with accommodations, I was taught to pursue it until it was accomplished. It started early on when I refused to take assignment modifications even though things took me much longer to complete than most of my classmates. It was the same with going to college, finding an apartment, and eventually finding employment. I was taught to keep fighting regardless of how many obstacles get in your way.

Over the years, I’ve witnessed many people with very similar circumstances choose to not to make use of the abilities they have. Often, these people have more physical capabilities than I do (mainly the ability to verbally speak which is huge), but don’t take advantage of them because they don’t have the ambition to jump through the so called “hoops” to get the accommodations they need. When I see this, it’s incredibly frustrating for me because I can’t help but think if I had the abilities they do where I would be. Another example is when people abuse the Social Security system. While I understand that some disabilities and health conditions are hidden, there are a lot of people who claim disability that would be fully capable of working. I can’t say much because I’m obviously on the system; however, I’m doing what I can to help provide for myself. Do I wish I was able to do more? Of course—I’d love nothing more than to be able to make enough income to be able to not be rely on the government programs, but that’s not physically possible for me.

There are many different types of “giving up.”  A few years ago, there was a big conversation among the disability community about the book entitled, “Me Before You.” It’s about a man who becomes paralyzed and he wants to commit suicide. However, because he’s physically unable to, someone else would have to assist him. There was discussion about ethics. Should someone be able to assist someone in ending his/her life if the person so desires? That’s a loaded question that has no right answer. Some people with disabilities and health conditions feel like their life isn’t worth living anymore and think it’d be better to end their life. Another example of “giving up” is when, sometimes, older people decide they have lived the life they desire and are ready to move on to the next endeavor. They Intentionally do things not to prolong their lives.

“Never give up” has been my motto for years. I used to close with it when I presented to high school students. It’s extremely hard for me to watch others not take advantage of the abilities they do have. I’m sure some people feel that I don’t take full advantage of my capabilities either; and, I respect and accept that opinion. Knowing that just pushes me to try and accomplish new things. For me, giving up will never be an option. My family and friends have worked too hard to support me in all my endeavors for me to give up on them. Sure, I have days where everything is going wrong and I feel like giving up on everything—I think everyone does, but it’s in those trying times where Jimmy V.’s words really come to fruition. “Don’t give up…don’t ever give up.”

***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.

Ever imagine what a perfect world would look like? A world where everyone would see eye-to-eye, where there’d be no right or wrong, where everyone was treated equal? What would that even look like? In today’s day and age, it’s hard to even fathom.  What would a perfect world even look like? Would there be sickness? Would there be disagreements? How would every person be treated? Would there be disability? If so, what would ideal services look like? All of these are deep questions to ponder and there isn’t a right answer.

As I mentioned before, I’m not an overly religious person, but I do believe that there is a reason I survived complications from a traumatic birth. I believe I won’t truly know why until I reach the other side, but there is a reason why I survived. Admittedly, when things get hard due to having cerebral palsy or not having sufficient services to help me live the life I desire, I think about this. Thoughts such as, “why can’t I get the support I need?” or “why do I have to deal with this?”  often creep into my head when things aren’t going right. Of course, it does no good to dwell on it, but the fact is that it’s unavoidable.  

The Americans with Disabilities Act was signed 32 years ago this month. Laws such as this have made a huge impact on the lives of people living with disabilities, but, yet, many people struggle to get long-term care support services. I’ve written about my care situation many times.   While it’s been a few months since I’ve written an entry about it, things haven’t improved. For over six years now, I’ve been hiring my own caregivers through IRIS Self-directed Personal Care. In that time, I’ve experienced the whole spectrum of craziness. Some of the stories you wouldn’t believe. The bottom line is still I can’t get reliable workers. Practically every day, I’m dealing with trying to fill a shift because someone called in. My parents continue to be my saving grace, but this has put a strain on our relationship too. They’re retired and want to travel all over the place as they should be able to do, but, because of my situation, they can’t leave me behind. This has resulted in arguments because they want me to go with them on multiple longer trips (because they can’t risk leaving me hanging if someone calls in or doesn’t show), but I don’t want to be gone that long for multiple reasons. First and foremost, if I’m gone a longer length of time, I risk losing the workers I do have—even with the low wages they make, these college students count on the income. Second, I have a job and commitments I need to fulfill. Yes, most of it is remote, but I have an elaborate computer setup I use at my apartment. When traveling, I have an iPad that I bring along that I can attend meetings on, but I can’t complete what I need to do on it. “I hate being a burden,” I told my mom during one of our recent discussions about this topic. Of course, she told me that I’m not, but I explained that I know I am. This seems to be a frequent conversation these days.

Long-term care services go beyond daily care needs. There are many disparities among things such as housing, transportation, therapy services and medical equipment. After direct care, housing and transportation are the two most talked about disparities in the disability community. There aren’t enough accessible housing options for those with disabilities. If people want to live in a non-segregated setting, finding something accessible is nearly impossible. I’m fortunate to have found my apartment over 10 years ago. While it started out as being a complex for those with disabilities, it has since changed to a complex for people who receive housing assistance—not only people with disabilities. Personally, it’s still not the ideal situation for me because I don’t think of myself that way (in my opinion, I’m only considered to be low income because of the restrictions I have due to my disability), it’s better than nothing. Transportation continues to be another issue for people with disabilities. Simply put, there aren’t enough accessible options available. I’ve had to limit my trips out and about because the only accessible cab in my city is so unreliable.  Disparities in treatment options and equipment also continue to be a challenge for many people with disabilities. Limiting the number of therapy sessions one can receive because it’s not considered “rehabilitative” is ridiculous. In my opinion, if therapy helps a person feel better and possibly prevents losing more function, they should be able to continue with therapy. These services are necessary to keep a person as healthy and, in some cases, as independent as possible.

In a perfect world, assuming disability a part of it (we could debate that issue forever and never come to an agreement), care would be something that is readily available to those who need it. Caregivers would get paid adequate wages and receive benefits and training. People who needed care wouldn’t have to fight tooth and nail to get dependable hard-working people to assist them with their basic needs. All long-term care services would be available to those who need them without having to jump through a million hoops to justify you need them.

Unfortunately, we know that a perfect world doesn’t exist and probably will never will. This means that we have to continue to advocate for what we deserve. Often, when we constantly advocate for what we feel what’s right, it feels like we hit dead-ends; like we’ve done all we can, but things aren’t changing. It’s in those challenging times that we have to continue to push ourselves to fight for what’s right. There may never be a perfect world, but knowing our efforts will impact generations that come after us should give us motivation to continue the fight!

***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.

Do you get nervous speaking in front of a crowd? Have you ever done something courageous like skydiving? Being courageous and taking risks is something we all do. Granted, being “risky” means something different everyone. Some people are riskier than others. Some people enjoy trying a challenge, while others prefer to stay on the safe side. Obviously, there are thousands of different risks we take every day that we don’t even think twice about. Crossing the street. Riding the bus. Getting out of bed. The list is truly endless. Taking risks is part of life, and can often lead to opportunities the person never dreamed possible. There is also forced risk meaning people have no other option than to try the task at-hand. People with disabilities are no different. We take risks just like everyone else. In fact, we likely take more risks than the average person.

“I couldn’t do what you do,” people often say when they meet my parents and I. While it’s a nice compliant, it likely isn’t true. Yes, admittedly, thanks to the support I receive from friends and family, I’ve turned into a pretty determined person, but, what many people don’t understand, is that I have no choice but to be. I literally depend on the assistance of other people to live. That alone is a huge forced risk that I have no choice in. Regardless of my living situation, being dependent on others is a risk in and of itself.

The biggest and most important risk I’ve ever taken was 19 years ago when I decided to go to UW-Whitewater. Because all of my friends were going away to college, I didn’t even realize how big of a deal it was. To me, it was just the next thing to in life. I don’t even think I thought about it as a risk. Even though, I spent the summer before typing up my care instructions for caregivers I had never even met, I never thought twice about being on my own down there was a risk. It was just the way it was. Sure, when it came time for my mom and sister to leave, I felt emotional and a little scared, but I thought that was pretty normal of an 18-year-old college freshman. My first night care was with a really sweet college student who could tell I was pretty nervous (I’m Facebook friends with her now, and, sometimes I message her and just say thank you for putting me at ease that night). The next morning is when reality hit and I realized “ohhh, ok, maybe this is a bigger deal than I thought.”  The aide who was supposed to get me up was over an hour late. Mind you, this is the very first morning I had woken up completely alone. We didn’t even think about having a phone by my bed. I had no idea what to do. I ended up rolling off my bed onto the floor, rolling over to my computer desk where my phone was, pulled the phone cord down, the receiver clunked me on the head, and I was trying to call my parents to see what to do when the aide walked in. Yeah, yikes! It was quite a reality check to say the least. I always tell people that I have no idea what convinced me to stay after that! It wasn’t until after I graduated from college that I began to realize what a giant leap of faith it was to move two hours away from home having never really had other people assist me with all of my needs. By taking that risk and succeeding, I proved to everyone, including myself, that I could live independently if given the right supports. The decision to give it a try at Whitewater has shaped my entire life!

Now, 13 years after graduating college, I find myself taking more risks than I ever have. Hiring my own caregivers is a huge risk. I don’t have backup. If someone doesn’t show up, my parents have to come. It’s a risk for me and a sacrifice for them. We have to trust that these people will show up. Yes, there have been several times in the last six years that people didn’t show up for a shift and we never hear from them again. I also have to risk having people physically take care of me. Unfortunately, the system is so messed up that I can’t train people properly. Technically, in the IRIS program, you’re not supposed to be able to pay people to train (again I think the assumption is that most IRIS participants use family and friends); however, we worked it out so that I am able to compensate people for one shift of training (by using some of my Supportive Home Care hours). This may sound like plenty, but it’s really not. I make do with what I have and have the person jump right in and do the actual care. The other worker is there to guide them. The new person often feels stressed and under pressure, but it’s the only way to do it. Having one training shift, the person is expected to be able to do it alone (this causes a lot of people to quit, but that’s beside the point of this entry). The first shift the person works alone is a huge risk for me. I don’t really know if they can do it alone and I don’t know what they would do if something happened. I have to risk putting my life in the person’s hands.

Being nonverbal adds another layer of risk to almost everything I do. Yes, I use the app on my phone to communicate, but there are many times that I can’t access my phone. When I use the restroom, shower, or transfer anywhere, I can’t use my phone. This probably doesn’t sound like a big deal to most people, but those are the crucial times when the caregivers usually get flustered and need guidance. Unfortunately, as you can imagine, this can be very frustrating for caregiver and I. In fact, several years ago, on a caregiver’s first shift alone, a transfer didn’t go right and I ended up on the bathroom floor. The caregiver flipped out, called my dad (who lives 45 minutes away), and ran out the door crying leaving me on the bathroom floor. Thankfully, she called my dad and we’ve since changed the way we do things, but it just shows the risk I have having to trust other people to assist me.

Living alone is another risk I choose to take. Countless things could happen that could literally leave me stranded for days, but it’s a risk I’m willing to take. Some people with disabilities aren’t comfortable living alone and I totally understand that. Another risk I choose to take is being vulnerable and putting my story out there. Some people aren’t comfortable with sharing so much of their personal life with the world, and that’s perfectly understandable. No doubt it’s risky putting your life out there, but, personally, I’ve come to believe that one of my main purposes in life is to show others what people can do despite their limitations.

All that said, I don’t consider myself a risk taker whatsoever—in fact, far from it. In my family, I’m known as the person who needs a plan and hates when anything changes. I’m not one to jump on anything spontaneous. The major risks I’ve taken in life have been required in order to live the life I desire. Sometimes, risks don’t work out the way we want, but taking risks often ignites a flame in us to make dreams become possibilities!

***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.

Ever have that feeling where you feel so selfish for feeling bad for yourself, but, yet, you also are so grateful for what you have? Those thoughts of what should/could/would have been; yet, you know you’re incredibly blessed despite the circumstances you have been given. At the beginning of each May, I have this inner conflict. No, not about whether to cheer for the Cubs or the Brewers, not about whether or not I should go for a stroll because it’s finally nice outside, or not about deciding on summer plans… I have a struggle within myself about Mother’s Day. I can’t say for sure, but I have an inkling I’m not the only woman who may struggle with this. On one hand, I know that I’m incredibly fortunate to have the amazing mom I do, but, yet, on the other hand, that selfish feeling of yearning to be a mother myself often creeps into my head.

In a previous entry I wrote a few years ago, I wrote about how I have the absolute best parents. Both my mom and dad are awesome and basically have dedicated their lives to make my life the best it possibly can be. My dad has modified countless things for me and does whatever he can to make my life better. He’s truly incredible. This is an article about Mother’s Day, but I couldn’t continue without mentioning him. He’s just incredible!

My mom and I have a very special relationship. Hands down, I’m honored to say she’s my best friend. As I’ve mentioned before, very ironically, she was in the special education field before I was even born. I don’t believe it was a coincidence. This has been such a blessing because she already knew about the laws and services available. She also had connections to various resources and people, and, even though she has been retired for a couple years now, she continues to. She knew the potential of what could become, and continues to push me and encourage me to be the best I can possibly be.

Unlike most daughters my age, I still rely on my mom for countless things. Everything from interviewing aides, to staying in the hospital with me, to bringing me to and being my assistant at various events… the list is truly endless. One thing sticks out to me, though. As I age, it’s no secret that I’ve struggled more with my mental and emotional health. My mom is my sounding board. I can’t even begin to count how many times I’ve broke down to her crying or texted her venting about one thing or another. My mom gets the brunt of it. Mom always listens and tries to calm me down. She always reminds me of all that I’ve done and tells me she understands (I believe she’s one of the few people who does truly understand). She’s my rock!

Mother’s Day is a day to thank and celebrate moms. I certainly celebrate and thank my incredible mom, but it’s a day that has become harder and harder for me over the years. Selfishly, in my heart, it’s a day that emphasizes what I want most in life, but will likely never happen. In a past entries, I’ve explained that some people who have disabilities are fully capable and do have children. Due to the severeness of my physical limitations, realistically, it’d be nearly impossible to care for a child. Yes, I could have assistance, but it wouldn’t be fair to the child. In my brain, I’ve come terms with the fact that I’ll likely never become a mother, but, in my heart, it’ll always hurt.

Now that my sister has become a mother and my mom has become a grandmother, it adds another layer to it. I do my best to be happy for them, but, the “what if” thoughts sometimes take over my brain. What if those complications during birth didn’t happen? Would I be a mother? Would I have made my mom a grandma first? What kind of a mom would I be? What would have my kids been like? Thoughts such as those do no good, but I believe they are unavoidable. Sharing that I have those thoughts shows how “normal” I am.  Social media also adds another layer. Years ago, I used to write a long post about my mom on Mother’s Day. She loved it as did friends and family. However, a few years ago, I realized that staying off social media during Mother’s Day weekend was better for my mental health. Seeing friends who are mothers post about how lucky they are to be moms to their kids selfishly triggered my emotions. As happy as I am for them, it was just too hard seeing that. I then explained that I wasn’t going to do a long post anymore to my mom and, of course, she said she understood. Is it selfish? Absolutely. Do I feel bad about it? Absolutely. However, it’s one less thing that reminds me of my situation. Again, thankfully, my mom “gets it.”

Women with disabilities aren’t the only ones that might have conflicting feelings about Mother’s Day. Women who struggle with infertility, people who lost their mothers, mothers who lost their child… There are many different scenarios. It’s a day of mixed emotions for many. I’m sure the same can be said about Father’s Day for men yearning to be fathers. While it may be a day of mixed feelings, it’s a time to recognize the mother figures in our life.

Happy Mother’s Day to all of the amazing moms out there—especially mine!

***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.” Yes, I’m aware that I used this quote to start a journal entry a mere two months ago; however, due to recent events at the Oscars, I felt I couldn’t find a better quote to exemplify just how much words do hurt. We all know that the quote is untrue. The Oscars were supposed to be a night of celebration—there was so much to be celebrated—especially for the disability community. The movie, "CODA," won the Academy Award for best picture. It also won the Oscar for best adapted screenplay, and Troy Kutsor became the first deaf actor to win an Academy Award. "CODA," which stands for child of deaf adults, is about a teenager who often interprets for her parents discovers she's a great singer, but finds herself divided between family obligations and pursuing her dreams. The disability representation was amazing, but one joke by host, Chris Rock, about Will Smith’s wife and Will’s extreme overreaction overshadowed the so many positives the night brought.

For those of you who have not heard, Will’s wife, Jada, has a condition called alopecia. It’s a skin condition that often leads to hair loss which is true for Jada—she has no hair. Chris Rock, a comedian, made some snarky joke about her starring in the next G.I. Jane movie, and Will got upset. He walked up on stage, slapped Chris, and started yelling expletives. This was all on live tv. I believe they cut to commercial, so not everyone saw the whole thing. However, it’s all over the media. 

Was Will wrong? Definitely. Was Chris wrong? Definitely. They both were. Will’s overreaction was extreme and should and will have consequences. Chris was also wrong, though. Did he know about Jada’s condition? Some reports say he did; others say he didn’t. Regardless, this brings me to my main point of this entry—making jokes about somebody’s appearance or abilities is never okay.

I’ll be honest, I was watching the Oscars, but somehow, missed the whole situation. I went to bed before it was over and didn’t see Will’s acceptance speech when he won best actor where he apologized for his actions. I became aware of the situation when I turned on the news the next morning. When I heard about it, I’m not going to lie, I kind of sided with Will. No, I’m not saying I condone his actions at all, but he was sticking up for his wife who got made fun of for a condition that she can’t help. People with disabilities or health conditions, including myself, can relate to this situation. Many people who look a little different than the norm are often the brunt of jokes.

Several years ago, a fairly new caregiver said something to the effect of, “you know, you’re lucky, you never have to buy new shoes because yours never wear out,” as she was feeding me lunch. She was implying that since I can’t walk, I don’t need to buy new shoes (which couldn’t be farther from the truth, but that’s beside the point).  I was taken back by her comment, but didn’t really react to her. Later, I posted it on my Facebook page thinking it would reinforce people to think about what they say to people. I was surprised when several people with similar circumstances thought it was funny. Of course, there were some people who agreed that it was insensitive, but we had an interesting conversation about it on my Facebook page.

I’ve also had people tell me that I’m lucky because I was lucky because I always have a seat. Now, I realize that there probably wasn’t any ill intent; people just weren’t thinking. However, words do hurt. I rarely respond back because I know they didn’t mean it in a harmful way. Whenever people say something like that to me though, it does affect my mental health. Really? Am I lucky to be in a wheelchair? Seriously? I’d gladly trade places with you and or walk if I could. Those are my thoughts when people say that I’m lucky because I always have a seat.

I realize I’m more sensitive about my condition than most. Other people are much stronger than I am and don’t mind when people make degrading jokes about their appearance and abilities. In fact, there are some semi famous comedians with disabilities who use their personal situation as content for their shows. While I understand the concept of using your circumstances as material makes people less uncomfortable, I can’t bring myself to agree with it. Why make fun of your appearance or abilities when we advocate for society not to? Isn’t that a double standard? It doesn’t make sense to me.

I realize that there are many different opinions about this topic, and I respect that. In today’s world where everything is so divided, I would hope people would to accept people for who they are, and if they want to make a joke about someone publicly, at the very least, ask the person beforehand if it’s ok to use. Personally, I love Will Smith as an actor, but I think he’s going to have a really rough road ahead of him. Physically hurting someone on a very public stage erases all the fame he once had. In my opinion, I think both Chris and Will should have taken a minute to apologize to each other (and Jada) at the end of the night. Will probably still would have faced consequences (as he should), but I think that would have done a lot for reputations of the two.

The lesson everyone can learn from all this is that words really can hurt. We knew it before; this situation just emphasized how much they really can. Be mindful of what you say to people. Words DO matter.

***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.