What is normal?  That’s a loaded question with no right or wrong answer. When people ask it, it’s often meant to be rhetorical leaving people to ponder. A common response to that question is, “there’s no such thing as normal.” That’s so true!  Regardless of the circumstances, normal is usually what everyone strives to be. In the disability community, the word “normal” is something we many times laugh at because it truly doesn’t exist in our world.  

Sometimes, people ask me if I could have one day- 24 hours- without CP, what would I do?  In other words, what would I do if I could be “normal” for a day? I honestly don’t even know.  I can’t even imagine.  First, I have to be realistic and say I understand that if there was a way I could be without CP for a day, I’d probably have to be a psych ward because it’d be such a shock to my entire body at first, I probably couldn’t handle myself. 

With that said, what’s the first thing I’d want to do? Yes, I have thought about it. It’s fun to daydream about. First of all, I’d want to know when it was going happen so that could have my close family and friends could be there.  When the magic first happened, (again, I’m fantasizing about this--realistically, anybody in that situation would likely need psychiatric treatment after that big of a shock to the body) I’d stand up and start hugging people. I’m not sure what I’d talk about, but I wouldn’t shut up the entire day! After hugging everyone there, I’d walk around the entire house (I’m assuming that I’d be at my parents house where I grew up) and experience walking up and down the stairs. I’d carry any babies and little kids around that were with me-–something I long to do.  We’d then go somewhere where I could try playing lots of sports just so I could see what it felt like to play the sports I love to watch. Then, we’d go to every inaccessible place in the area, so I could experience it. I’d visit friends’ houses and go up the lighthouse. I’d go to small jammed restaurants and eat the messiest foods. When we got back to my parents, explore the house some more--do simple things such as run through the grass and ride a bike. I’d probably try driving a vehicle too just so I could experience it.  I would end the day by walking around the neighborhood and chatting with my friends and family until my time was up.  That’s how I’d spend my day!

Is my fantasy realistic?   Absolutely not. If given the chance, would I do it?  Probably.  I’m not sure how I’d handle going back to having cerebral palsy. On one hand, I think it’d be incredibly hard because you just experienced a lot of things you’ll likely never be able to do again; however, part of me wonders if you’d almost miss having the limitations. It’s interesting to think about, but, if given the chance, I think I would do it.

Now, I know and understand this is one of those controversial topics among people with different abilities. Many people feel their disability is a part of who they are and they wouldn’t change it. While I respect their opinion, that’s not me. Like I’ve said in past entries, yes, I accept that I have cerebral palsy and a it’s part of my life; however it doesn’t define the person I am. For that reason, if given the chance, I’d love to experience “normalcy.”  I’m not expecting it in my lifetime.  If it happens, great, but if it doesn’t, that’s okay too.

Normalcy is something we all crave and strive for.  That said, definitions of “normal” widely vary. Unless referring to something static like temperature, the word usually can be used pretty loosely. While we all have our own unique definitions, society has its own that many people continue to strive for!

***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.  

Whether it’s for a fun getaway or for work, staying at a hotel is usually an experience people enjoy. Getting away from day to day life is often something many people look forward to. Regardless of the length of time, staying in a different environment is usually kind of fun. Whether it’s the waterpark, the sauna, the workout room, or a different amenity, it’s often fun to look around and see what the place has to offer. For people with physical disabilities, exploring hotels is also enjoyable experience; however, we often look at different things.  How many people walk into a hotel room and the first thing they look at is the toilet seat? I certainly hope not many people, but for me that’s reality. Yes, it sounds absolutely ridiculous, but it’s true. Let me explain.

In past entries, I’ve mentioned that as a child my family traveled a lot. My parents wanted my sister and I to see and experience as much as we could. We stayed in hundreds of hotels across the country and beyond. Obviously, each hotel has different amenities and features.   “Accessible” rooms are available at most places these days which is nice; however, we’ve learned the word “accessible” can widely vary.  Many times, we’ve found that it’s better to ask for a reason with “more space” rather than an accessible room.  In many cases, accessible rooms have only one king-size bed in them.  For obvious reasons, that doesn’t work so well when there are multiple people staying in the room.  The accessible rooms often aren’t the rooms with the most space either.  Using a power wheelchair, I need space to maneuver around.  I’ve been in rooms where there wasn’t enough space to turn my chair around—I had to literally back my chair out of the doorway into the hotel hallway.  We’ve learned that when we book a hotel room, we not only ask for an accessible room, but also a room with lots of space.

Often, accessible rooms have roll-in showers.  Some hotels provide a basic shower chair; some people bring their own.  My shower chair is very customized and pretty cumbersome, so I’m not able to travel with it.  For various reasons, I can’t take a shower when I stay at hotels, so I sponge bathe and wash my hair in the sink.  That can be if (and it’s a big if) my wheelchair can get into the bathroom; I usually can’t fit it under the sink.  My mom and I have learned to get creative and can usually figure out a way.  As I mentored earlier, when I first enter a hotel room, the toilet seat truly is the first thing I look at.  Why you ask?  Because I’m notorious for breaking them.  Many hotels have inexpensive toilet seats with plastic hinges.   When I sit on them and move to stabilize myself, the hinges often crack.  At my apartment and at my parents’ house, we’ve put knobs on the bottom of the seat so it can’t shift back and forth.  Obviously, we can’t carry a toilet seat around everywhere we go, so my dad brings little toolkit along and he tightens the bolts on the seat.  When I’m on those kinds of seats, I have to be careful how I reposition myself.  I’ve broken way too many!

Another thing in hotels that sometimes cause issues for people with disabilities are the beds.  Depending on ability, higher beds are easier for people to transfer in and out of; for some, lower beds are better.  Everyone has a preference about bed mattresses.  Some people like a very soft pillow top mattress while others like more of a firm one.  Most hotels seem to have pillow top ones.  For me, personally, those don’t work out to well because my body sinks in and I don’t have the muscle strength to move my extremities around on it.  My muscles get very stiff on pillow top mattresses, but obviously when making reservations,, people can’t request a certain type of bed.

We’re a big swimming pool people in my family—we love to swim!  Swimming is so good for my muscles.  When we go on vacation, it’s usually centered around swimming.  For people with physical challenges, just accessing the pool deck can be a struggle.  Although, it’s vastly improved in recent years, stairs would be the only way to access the pool area at some hotels.  When I was young, my parents took my stroller or manual chair on vacation, so my dad would just tilt me back and bump me up and down the steps.  That changed as I got older and wanted my power chair so I could move around independently.  We’ve had to cancel reservations and find a different hotel due to this.   Once I’m in the pool area, another challenge is getting into the actual pool.  Thanks to a law, hotel pools are now required to have a chair lift to help people with various physical limitations get in and out of the pool.  Most pools we’ve been at recently do have one; however, the problem is either the lift isn’t working or the hotel staff doesn’t know how it works.  Over the holidays, my parents and I were in Florida for about three weeks and stayed in multiple hotels.  At many of the hotels the lifts were not working.  At one of the places, the repairman tried to fix it, told us it’d be fixed by the end of the week, but it wasn’t.  Luckily, my parents are still able to get me in and out of the pool so I was able to swim; hotels, it’s not very safe.  I think part of the problem is that the lifts don’t get used very often, so routine maintenance doesn’t happen.  Perhaps a requirement of a monthly maintenance check would help with this.

In my opinion, hotel accessibility has a long way to go.  I didn’t even discuss the many other accessibility issues the general public likely doesn’t even think twice about it.  Things such as curb cutouts, automatic doors, accessible counters, and wide doorways (just to name a few) are other things people with physical limitations have to consider when looking at hotels.  It’s getting better, but there’s definitely room for improvement! 

***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.   

There’s a saying that goes around during this time of year that goes something like this:  “as you grow older, your Christmas list gets smaller, the things you really want can’t be bought.” Similar sayings are often shared around social media.  Obviously, people share it for many different reasons. Often, it could be the first holiday season without a loved one or a serious medical diagnosis that’s behind the post. The holidays can be hard for many people for a variety of reasons. For some people with disabilities, the holiday season comes with a mixed bag of emotions.

A few years ago, I did an entry about how the stress of the holidays can weigh heavy on people with disabilities. In that entry, I talked about how it can be emotionally hard for many people—not just those with disabilities—to attend all the holiday parties and events.  I explained that I happen to be the oldest cousin on both sides, so, as we get older, my cousins do the normal things such as get married and have kids.  I’m not sure why—probably because it’s one of the few times everybody is together—but it seems like engagement and pregnancy announcements often happen during family Christmas get-togethers.  While I never ever want to take away the couple’s joy of being congratulated and everybody’s excitement for them, it’s very hard to witness.  Not because I’m not happy for the couple—I truly am—but because I very selfishly desperately desire those things for myself.  Knowing, due to my circumstances, I may never be able to experience those things, is pretty tough—especially when it seems like everyone around you is living the life you dream of.

Major announcements are just one of the things that may cause people to have mixed emotions during the holidays.  Another thing that may be difficult for some people is finding topics for conversation.  Sometimes, when you have a significant disability or health conditions, you don’t realize how vastly different your life is until you listen to others conversing about their lives.  While somebody maybe worried about what color to paint a bedroom in their house or wondering what sports their child will play, I’m quietly wondering to myself which care shifts I need filled for the next week so I can use the restroom and eat.  This goes beyond just myself.  When we get together with extended family, my parents often find themselves in a similar situation.  Especially now, since their brothers and sisters are getting to retirement age, they’re talking about plans to travel all over the place.  While my parents would love to travel (probably even more than their siblings), due to my circumstances, they can’t.   We try not to think of these situations negatively, but it makes us realize just how different our life Is.  I’m in no way meaning to disrespect our extended family either.  They do try to understand our circumstances, but, like with anything, unless you experience it first hand, you don’t fully understand.   It’s just the way life is.

As the years go on, the extended family Christmas gatherings get bigger and bigger as the cousins have families of their own.  Eventually, it’s going to get to the point where the big gathering on each side will stop, and each immediate family will just do their own.  This saddens me to think about.  Yes, my parents will hopefully be around for many more years, and my sister will always make efforts to include me in her holiday family things; however, I realize there may come a time when I’m not able to be with family during the holidays.

In recent years, social media has added another factor to the stress of the holidays for some people.  For me, looking on social media on any holiday is a double-edged sword.  On one hand, I love being nosey and looking at  everyone’s photos.  On the other hand, though, seeing people my age have families of their own makes me wish I had that.

Normally, I’m pretty good at seeing happiness through others, but, very admittedly, the holiday season can sometimes be pretty tough.  Personally, nothing on my wish list can be bought, and, it has been that way for many years.  I think it’s that way for many adults though.  There are many different intangible things people wish for.  Some are received; some unfortunately are not.  This is all part of this thing called life. 

The holiday season brings on different kinds of emotions for everyone.  There are many different ways to deal with these.  For me, personally, I find it helpful to remember all things I do have and think about all of things I’ve accomplished despite my disability. It’s challenging to do—especially during those tough times—but, we need to focus and make the best of what we do have; not dwell on what could, would, or should have been.  All the time, but especially during the holidays, we need to take a moment to be grateful for all that we do have!

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

Can you imagine your life without a computer? Most people now literally spend hours and hours a day on a computer.  Everything from writing reports for work to paying bills, to playing games, to researching and booking a vacation, the uses of computers are truly endless. Whether people like it or not, computers are part of our lives.   How many times have you thought about what muscles it takes to move the mouse across the screen or type a word on the keyboard? Most people don’t even think twice about what physical abilities it takes to use a keyboard and mouse.  Although computers can open many great opportunities for people with disabilities, accessing them can often present many challenges.

Since it was known pretty much from birth that my disability would affect my fine motor skills, I’ve used computers almost all of my life. I think my first actual computer was an Apple 2. I used a huge enlarged keyboard (seriously, I think it was at least two feet by two feet). It had a key guard to prevent me from hitting multiple keys at once. I don’t think it had mouse functions though.   I remember practicing typing my numbers on a blue screen. In first grade, I think I started using one of the very first Macintosh computers with the same keyboard. Around that time, I also started experimenting with different augmentative communication device.   Again, access was an issue because I have limited fine motor ability really only in one hand. My right hand doesn’t really work and the left has limited function, so we had to trial and error lots of different access methods. I tried things such as different switches, headpointers, and other equipment. We spent hours trying different positions and techniques.  With each piece of equipment I tried, I was timed to see what was fastest. My occupational therapist and speech therapists spent hours collecting data to figure out what would work best.   I was a pretty stubborn kid, and didn’t like to use anything except for my hand. I don’t know why, but I still feel that way—probably because I feel like I have most control over it.

As the years went on, the keyboards became smaller and more advanced.  They began to have built in mouse functions which allowed me to use the mouse independently.  I had a few different keyboards over the years. The computers also became smaller too. Eventually, communication devices became computers and for a few years I used my device as a computer at school. I’ve always had a desktop computer at home though. We usually tried to have the same setup as I used at home.  It just made it easier for homework.

When I went away to college, I went back to using both a communication device and a desktop computer because it was just easier.  Actually, during one of visits before I started, the Center for Students with Disabilities showed me the Intellikeys keyboard.  It’s an enlarged keyboard with the mouse functions built-in.   I’ve been using it for over 17 years.  It works great.  However, as I explained in a previous entry, the keyboard was discontinued about five years ago and to my knowledge there still isn’t a keyboard on the market that has built-in mouse functions.  Luckily, Intellikeys still works with my current operating system, but, as technology advances, I know there will come a point where it won’t anymore.

I mentioned in an entry a few months ago that I was going to be getting an eye gaze system.  My parents and I first learned about it when we visited my Independent Living Center in March.  The assistive technology person thought I might be a good candidate for it.  In April, a representative from the eye gaze company came to see if I would be.  The way she tested me was really neat.  She hooked the device (which looks like a ruler) up to her tablet, and there’s a program that calibrates it to your eyes.  There was a screen that had dots and I had to look at each dot until it burst.  I got like a 96% on it which meant I definitely would be able to use it.  We learned that I could funding assistance through a grant program AT&T has for people with disabilities.  The rep began the paperwork which took a few weeks a process, and in May, I learned my application for the voucher was approved.  I paid my part of the deal and the rep ordered my eye gaze system.

I first got it in early June and had to setup an appointment with the rep to get it installed.  As luck would have it, I got a faulty device, and we had to send it in three different times.  Each time, it was gone for a couple weeks and then I had to wait until the rep was in the area so she set it up and try it.  It turned out to a very frustrating several month process.  In mid-October, it came back and it finally worked!  The rep installed it, but she didn’t do a very good job of mounting it or teaching me how to use it.  My parents had to remount it so I could use it, and I’ve been slowly teaching myself how to use it.

It’s definitely a very neat concept, but it’s going to take quite a while to learn and effectually use.  Using just my eyes, I can control the mouse and type on an onscreen keyboard.  The mouse functions such as  double-click, right-click, left-click, drag, and scroll are all on a bar on a side of the screen, and when I want to use one of those, I look at the icon for a second and then look at the spot where I want the function to take place.  It’s hard to explain and even harder to do at this point.  It’s going to take a lot of practice, but hopefully I’ll get used to it.  For the time being, I’m using a combination of the Intellikeys and the eye gaze.  Eventually, the eye gaze will probably have to replace the keyboard, but hopefully that’s a few years down the road.

I know I keep saying this, but technology has come a long way.  Who would have thought 20 years ago that people would be able to use the computer just by moving their eyes?  It’s pretty amazing.  I just wonder what the next big thing will be! 

***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.

It’s often said that there are five seasons in Wisconsin—Winter, Spring, Summer, Fall, and Road Construction.  Obviously, calling road construction a season is a facetious way of saving that there’s a lot of road work that goes on from about April until November.  Road construction often leads to delays and detours.  Even though it’s necessary to keep the roads functional and safe, people usually get aggravated by it because it takes longer to reach their destination.  Nothing really can be done about it other than leaving earlier or finding different routes.  It’s part of life.  Many people with physical disabilities don’t drive, but we often experience our own type of road construction so to speak—navigating through life in an “accessible” world.

Unless one is unable to, people don’t think about how many times they did step up and down from something each day. Whether it’s stepping in and out of a vehicle, stepping off a sidewalk to cross the street, or riding a escalator in an airport, people step up and down multiple times a day.  People who have mobility issues often are very aware of these things because we have to find ways to overcome these simple steps that most people take for granted.

Thanks to the Americans with Disabilities Act, most public places are “accessible.”  I put the word accessible in quotes because, in my opinion, it’s a relatively loosely used term in today’s day in age.  Don’t get me wrong, I’m very grateful for the advancements in accessibility over the last 30 years.  They have greatly improved my life and have allowed me to do and experience many wonderful things.  However, with that said, there is still vast room for improvement.  I also should mention that in many cases things that are deemed accessible often require people to go to great lengths in order to access whatever it is.  Let me explain.

My parents and I recently returned from a trip to Las Vegas.  We’re not huge gamblers, but I love the city because there’s always so much going on.  Since I love going there, we usually go once a year.  After the airlines ruined my power chair a few years ago, I only fly with my manual wheelchair, so I have to be pushed everywhere.  I’ll write about getting through an airport in another journal another time, but everything from getting an accessible shuttle to our hotel to crossing the street we seemed to run into barriers.

We’re pretty seasoned travelers, so my dad had booked a wheelchair accessible shuttle to the hotel.  We get there, and, of course, vans from the transport company were there; however, not the accessible one.  We had to wait over a half hour for it.  We finally get to our hotel and start walking around.  There are lots of skywalk bridges between the hotels on the Strip.  Each side of the skywalk has stairs, an escalator, and an elevator.  In Vegas, elevators seem to frequently break down.  Multiple times, we found ourselves stuck on a skywalk because an elevator was out.  When that happened, we usually had to go back down in the elevator that was working and find a different way.  Admittedly, very unsafe, but there were a few times where my dad justice tilted my chair back and took in me down the escalator (we found some nice people to stand in front of me in case I’d fall).

Skywalks weren’t the only thing.  There were four steps up to the pool deck at our hotel.  If people with mobility issues wanted to go to and from the pool area, they had to find a hotel employee who would have to call another employee to walk us through the back to get to and from it.  This would take forever, so my dad just pulled my chair up and down the stairs each time.  Our hotel’s casino had four stairs in the middle of the going to the lower tier where the main entrance was.  The ramp was under construction all the while we were there.  Again, they wanted people who used wheelchairs and scooters to wait to be escorted around the back.  We never did this because we didn’t want to wait—my dad again pulled me up and down each time.  When you have a limited time on vacation somewhere, the last thing you is wait to be escorted because you can’t do stairs.

Vegas isn’t the only place where these things happen.  It’s really everywhere.  Many places’ accessible entrances often aren’t their main entrances.  While I’m thankful there’s an accessible entrance, it doesn’t seem fair to me that I have to use a different entrance then everybody else.  Obviously, that’s just my opinion, and I understand that everything can’t be made totally accessible everywhere.

Though, our “road construction” isn’t what most people think of, it’s still aggravating.  While it’s fun to fantasize about, I don’t think there will ever be a totality accessible world.  There will probably always be roadblocks and detours people with disabilities to overcome.  Life is full of detours and roadblocks for everyone—not just those with disabilities.  It’s hoping we handle and persevere through them that shows a person’s character!

***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.

“It takes a village to raise a child.”  It’s a saying commonly used when talking about supporting a child who has disabilities.  Whether it’s before the child is even born, right after birth, or years later, when parents learn that there’s something “wrong” with their child, panic strikes.  A million questions go through their heads.  Getting that initial diagnosis and prognosis is often life-changing for the entire family.  After the shock wears off, it’s often realized that, although it’s probably different than originally planned, life goes on.  It’s realized that there are special people in the world to help guide you on this journey of life.  Many times, special relationships are formed and these amazing people are lifelong friends.  They may not be soccer coaches or dance moms you once dreamed of being friends with; instead, these people are therapists, paraprofessionals, and other families with special needs that have supported you along the way.

As I’ve explained in other entries, complications during birth caused brain damage resulting in my diagnosis of cerebral palsy.  Though I wasn’t officially diagnosed until I was three months old, because of the lack of oxygen I had at birth, my parents knew immediately I’d likely have some limitations.  At eight months old, I started physical therapy.  I went to a private therapy place in Oshkosh.  Because of the dynamics of this place, the physical therapist and some of her clients were able to form a special bond.  There were five or six of us around the same age with similar circumstances.  It was a pretty unique situation.  The families were able to help each other with different resources and things.  A couple of us were on United Cerebral Palsy (UCP) telethons together.  There was a speech therapist and occupational therapist in the facility that some of us saw.  I saw the physical therapist until I was over 16 years old.  We became like a big family.  We supported each other through life’s ups and downs.  Thanks to Facebook, many of us have reconnected and kept in touch.  It’s very neat to see where we all ended up.  Looking back, it’s amazing to see how far we’ve all come.  I recently met the physical therapist for dinner.  It was really fun to catch up and fill her in on what I’m doing.  It’s partly thanks to her, I am where I am today.

Another group of those special people are the therapists I had in school.  I’ve explained before that throughout my school years I had physical, occupational, and speech therapies.  The frequency of these therapies depended on my needs each year.  I had some great physical and speech therapists throughout the years.  I still occasionally keep in touch with some of them and they love hearing how well I’m doing.  I was also very fortunate to have the same occupational therapist from Early Childhood through my senior year of high school.  Again, she helped my family and I navigate through school system.  She was such an important key to my success.  In fact, when I do presentations or participate in board meetings, I often think of her because we worked for years and years with different assistive technology for my communication.  I have her on Facebook and sometimes I send her a message just saying “Hey I’m doing this and this—it’s because of all your help back in the day I’m able to do these things.”

Paraprofessionals are another group of a very special people in life.  Again, in past entries I’ve explained that thanks to the amazing paraprofessionals I had, I was able to succeed in regular education classes starting in kindergarten on.  These ladies helped me with whatever I physically needed to succeed in the regular class.  Everything from getting my jacket on and off, to feeding and toileting, to getting books out and taking notes, to setting up my computer or being my scribe for tests…  the list goes on and on.  I was truly blessed to have many outstanding paraprofessionals in my life.  Because they worked closely usually one-on-one with me every day at school, I became pretty close with most of them and keep in touch with them to this day.  I was incredibly blessed to have the same main assistant for eleven years.  Obviously, we became very close and remain close to this day.  We consider each other family.  We’ve become friends with each other’s extended families.  It’s definitely a very special relationship.  I think everybody in both of our lives know that we wouldn’t be the same people we are if we hadn’t met!  It was definitely meant to be!

There are many other special people in my life, but these relationships probably wouldn’t have happened if I didn’t have the unique circumstances I do.  Many people my age have friends from moms’ groups, friends from their kids’ activities, friends from a volleyball league or other activities.  While I’ll probably never friends from situations such as those, I’m incredibly fortunate to be friends with so many people who made such a profound impact on my life.  It really does take a village, and I’m truly blessed to have an outstanding village of people who continue to support me! 

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

Ever find yourself wondering which side you’re on?  Whether it’s a game where your two favorite teams, deciding between two colors of paint for a home remodel project, determining which political candidate is best, or something as simple as deciding between your two favorite foods, everybody has had to make decisions that they’re uncertain of.  Often, there isn’t a right or wrong decision; but what we decide usually has a (positive or negative) impact.  When we are trying to decide on something, we sometimes have that feeling of uncertainty.  Should I be doing this?  Is this right for me?  What if I chose something different?  That feeling of uncertainty is something we all face on a daily basis and it’s not a bad thing.  Often times, we feel “on the fence” about the decisions we make which sometimes makes us questions things.  When we are “on the fence” about something, we don’t know how to feel about whatever it is.

In past entries, I’ve explained how unless I’m in situations that presents itself, I normally don’t think of myself of having a disability.  No, I’m not ashamed of it; it’s just not something I focus on.  It wasn’t really until after college that I learned the world of disability advocacy existed to the extent it does.  My first job of being an online mentor for students with disabilities really led me into the advocacy world.  Especially after college, I quickly learned that it was something I wanted to get involved in.  Advocating has opened many doors for me and I’ve found my purpose.  I truly love it!

Having said that, though, I often still find myself struggling to find a happy medium.  I feel like I’m somewhere in between most of the time.  I have many friends with disabilities.  It’s interesting to me that most are either completely involved in disability advocacy or they aren’t at all.  I know very few who are in between like myself.

The past month or so has been a great example of this conundrum.  I was gone three weekends in a row in late July and early August.  I had multiple events going on each weekend and my parents arranged their schedule to accommodate me.  The first weekend I met three of my friends from college for lunch and shopping in Milwaukee.  It’s something that I look forward to every year because it’s the only time we all get together.  One of my friends now lives in a different country and she and her family only come back once a year.  We always make sure we get together when she’s home.  These three girls were caregivers for me at UW-Whitewater and the four of us became really close friends. 

The second weekend was when I really felt mixed emotions.  I told my mom I felt like it was a weekend of two extremes.  Saturday, my mom and I were at Disability Pride Fest in Madison literally all day long.  I’m part of a group that’s creating to YouTube channel about people with disabilities and we taped some videos at the festival.  It was a long day, but I had a blast.   Again, I guess I’m used to sticking out, so when I’m around people with all types of different abilities, it’s a unique feeling.  I loved blending in with the crowd and not being stared at or judged If my muscles spasmed or if my tongue accidentally stuck out.  There are very few places where I don’t stick out.  As I’ve explained in other entries, since my disability is very apparent, when I’m at something like that, I automatically feel the need to prove my intelligence.  Please understand that by saying that, I’m in no way trying to belittle people who have intellectual disabilities; it’s just that when you’re nonverbal and use a wheelchair, people unfortunately make assumptions.  The more events I attend, the more comfortable I get.  I truly love being an active member of the disability community.

Sunday of that weekend I attended a gender reveal party for one of my best friends from grade school.  When I got the Facebook invite, I had to take a second to just breathe.  I knew I had to attend because love my friend and wouldn’t miss it for the world, but I also knew it’d be selfishly emotional for me.  As happy as I am for my friend, I just want those exciting life moments for myself.  Knowing I’ll never likely experience those life-changing moments can be a hard pill to swallow.  However, I knew I couldn’t let it stop me from going and supporting my friends.  Mom and I went and it was a great time. Their family and friends know me and are very accepting.  I caught up with another friend and her family too which was very nice.  When they did the reveal, I had to take a couple seconds to compose myself, but then I was fine.  I’m so happy for her and her family, and I’m incredibly blessed to have friends who continue to go out of their way to include me in their life—it truly means the world to me!

The last weekend my parents and I drove all the way up to Superior where I had a two-day Independent Living Council meeting.  The Council rotates meeting at the eight Independent Living Centers across Wisconsin.  I’ve been on the Council for about two years now, and I finally feel like I understand what it’s about.  I’m becoming more and more active on it.

One of the weekends, my mom and I were talking and I said, “man, I’ve taken us on quite a journey, haven’t I?” She chuckled and agreed.  The events of the last month have been a whirlwind.   I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can.  At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world. 

***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.

Whether it’s getting a new car, a new outfit, new appliances, or whatever it may be, getting something new brings excitement to people most of the time.  Usually, people want to show the item off or tell others about it.  Depending on what it is, it’s often fun to try it out or play with it.  It’s almost human nature to feel some excitement when we get something new.  Sometimes, though, getting new things can bring on mixed emotions and can feel like a reality check.

Every five to ten years, I get a new power wheelchair.  I’ve used one since I was two years old, so I’m on my sixth one.  My current one is just over three years old, so I won’t be due for another one for quite awhile.  People are often surprised when I say that’s a good thing.  Most people assume getting a new wheelchair is like getting a new car.  When it’s time for a new chair, countless people tell me, “oh, you must be so excited to get your chair.”  I just smile and laugh to myself when I hear that because it couldn’t be further from the truth.

When people get a new wheelchair—especially a customized one—it’s often a several month (or longer) process.   First, if people rely on government benefits, which most people with disabilities do, you need a very specific letter justifying why you need a new chair.  With Medicaid, a new chair has to be less expensive than the repairs and modifications needed to fix your current one.  Getting that letter from your Durable Medical Equipment (DME) provider isn’t easy.  They have to specify every single thing wrong with your current chair, explain in detail what modifications are needed, and why a new chair would be more beneficial for you.  It often takes at least a month to get a response from Medicaid.  If they say no or have questions, the DME provider has to submit a response again and wait another month to hear.  Once you finally get a yes, you then have to meet with your DME provider and often a physical therapist to determine what specific chair and features would be best for you.  Based on that, you have to meet with your primary doctor to discuss the features (it has to be in the case notes that you specifically discussed it) and get a prescription for a wheelchair.  The DME provider then submits all the paperwork to Medicaid again and we play the waiting game again.  This process takes a very long time—especially if you have customized features (elevate, tilt, recline, etc…).  Eventually, when Medicaid comes back with a decent compromise (you likely won’t get everything you want—even with justification; I was denied the elevate feature on my current chair), the provider then finally orders your chair.  At that time, depending on the type of chair you get, if you’re lucky you get to choose the color of your wheel fenders.

Once the chair ordered, it takes another couple months for it to come in.  When the DME provider gets it, they assemble it and modify it to further meet your needs.  Finally, you setup an appointment to get your new chair.  Sounds exciting, right?  Not really.  It’s actually a pretty stressful day.  With you there, they make even more adjustments and modifications based on your body and ability.  For many people, including myself, it’s very hard to adjust to a new seating system.  Even though, our posture is likely better in the new chair (because in many cases that’s one of the main reasons why we end up getting a new chair), our bodies aren’t used to it.  In fact, many times, people have to ease into using their new chair because it’s so overwhelming on the body.  It definitely takes a couple weeks to get used to.  While, yes, it’s eventually kind of cool to show people your new chair sometimes, I don’t consider it fun.  It’s frightening to think about what my life would be like without the invention of power wheelchairs, but, having said that, I’d give anything not to have to rely on one!

Power wheelchairs aren’t the only equipment I now rely on.  In a past entry, I mentioned that I had to get additional pieces of equipment a few months ago.  I received a Hoyer lift and a shower/commode chair.  While it didn’t take quite as much time as power chairs do, I had to go through the same process.  This equipment allows for safer transfers and better hygiene.  My mom, dad, and sister were all with me when my DME provider delivered the Hoyer lift.  The Rehab Tech trained them on how to use it, and then my mom and sister spent a day training my staff on it.  This probably sounds very petty, but having the lift brought into my apartment wasn’t easy for me.  Besides my adapted computer table and desk in my office, I didn’t really have any special equipment.  To simply put it, my apartment looked pretty “normal.”  Even though I know they’ll help me be able to live independently longer, bringing two additional pieces of equipment in was a reality check for me.  It was a punch in stomach realizing that I need these things to live.

Sometimes, getting new things isn’t always fun, but often, it’s necessary.  This is the case for people who rely on medical equipment to literally survive.  While getting new medical equipment or assistive devices isn’t necessarily fun and can come with mixed emotions, it’s part of life for many people living with disabilities and health conditions.  It just makes it that much more special when we do get those fun new things! 

***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.