Being a starter on a sports team.  Standing up in a wedding.  Getting a promotion at work.  Being asked to speak at a big event.  What do these things have in common?  Things such as these make an individual feel valued.  Being valued is a psychological need of every single person on this earth.  There are a million different ways to make a person feel valued, and what makes an individual feel that way varies from person-to-person.  Feeling valued, wanted, and needed is essential to everybody.  In today’s society, it’s especially important that people feel valued.  People who have disabilities or health conditions are no different; we need and deserve to feel valued just like everybody else. In fact, sometimes, I believe people who have any sort of limitation have the need to feel more valued because, the truth is, society still doesn’t view us as equal. 

“I know you’re busy, but I’d like to come visit with Parker a day next week.  We won’t stay long.  What day would work best?,” my sister recently texted me.  Nearing the end of her maternity leave with my second nephew and wanting to visit my parents as well, she was trying to find a day to drive up.  Having talked with my parents, they told her how busy I’ve recently become.  After looking at my calendar and texting her back with the few days and times that’d work, I was talking with my mom and I said, “it’s weird that people have to schedule around my stuff. It’s usually vice versa.” What I mean by this is that I’m not used to being this busy.

As I’ve discussed in past entries, I’ve learned the hard way that my body can handle so much.  A few years ago, I took on another very part-time job doing very similar things I do for InControl Wisconsin.  People had reached out to me and encouraged me to apply.  The fact that people thought that I had the right skills and would bring value to the organization meant so much to me.  However, as I explained, a few months into the job, I ended up having emergency surgery.  After doing my best to continue working while I recovered, I discovered that my body couldn’t handle it.  Much to my dismay, after many doctor and hospital visits, I ended up resigning from the position. People totally understood, but it was really hard on me because I knew that people valued me and wanted me to do it.

That was nearly two years ago.  Knock-on-wood, my health has vastly improved and I’ve been on a really good streak.  Because of that, I’ve been able to participate in more activities and take on more responsibilities. I’m not sure of the reason, but it seems like in the past month or so, I’ve been fortunate to have been asked to participate in several different advocacy activities. With almost all of these opportunities, people reached out to me and asked me to participate in the particular activity because they thought I’d add value to the project.  Due to timing, I had to say no to one or two of the things, but I’ve been able to do most of the opportunities.

Having people reach out to me because they think I bring value to something is an unexplainable feeling.  Although, the perception of persons with disabilities has vastly improved, I still constantly feel the need to prove myself.  As I’ve said before, being in a wheelchair, having involuntary movements, and being nonverbal, I know people make assumptions.  I get it—I make them too.  We all do.  It’s human nature to.  Admittedly, knowing this, makes me self-conscious and I find myself always trying to show people that, despite my physical challenges, I can accomplish things and be successful.

Knowing that people value who I am and what I do greatly boosts my confidence.  It does for everyone, but, for people who have blatant stereotypes attached to them, being wanted and needed means a little more. Personally, as I’ve shared before, when I get discouraged or depressed because things aren’t going well or I can’t do something, my mom reminds me of all that I’ve accomplished and of all the people who value me.  Honestly, depending on the situation, often I shrug it off because she’s my mom and she has to say those things; however, deep down, it helps to be reminded.

Being valued greatly improves one’s self-worth.  Everybody benefits from getting a boost of confidence every once in a while. Have you made somebody feel valued recently?  My challenge for you is to make a friend, family member, or colleague feel valued today.  By doing so, there’s a strong possibility that you’ll feel more valued as well! 

***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.

$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.