Often times I get asked if I could have one ability that I don’t have, what would it be.  Many people are surprised by my response.  Sure, I’d love to walk, feed myself, take care of myself, and be able to do things like drive, but the one ability I’d love to have is to speak clearly.  Most people don’t understand the impact that verbal interaction has in today’s world.

Many times people think I have a cognitive disability just because I’m in a wheelchair and can’t speak clearly. I’ve had many different augmentative communication devices over the years.  Many people with speech impairments use communication devices very effectively, but, admittedly, I’ve never been one of those people.  Sure, I used one for classes throughout my schooling, and I still have one for things such as presentations and events where I have to speak to strangers. I don’t use it for day-to-day communication though.  There are a few reasons for this.  One is because, although devices have become much more compact, having it mounted to my chair is cumbersome (I can’t pull up to my computer desk or any table with the mount on).  Secondly, and probably the main reason is that speech programs take a lot of time to learn how to effectively use.  Many people compare it to learning a second language.  Honestly, that concept has never appealed to me.  I’ve learned how to program buttons on my device for what I need to say during certain events (such as conferences and classes), but I find faster ways to spontaneously communicate.  I use the speech I do have and lots of gestures.  I speak in vowel sounds.  For example, my sister’s name is Stephanie.  I call her “et-en-nie.”  It takes awhile to get used to, but if people are around me enough, they usually catch on pretty fast.  If family or friends can’t understand me, they ask me yes or no questions, or I type it on the cell phone.  It may take a little while, but eventually I’ll get my point across. 

Without even realizing it people judge other people.  We all do-it’s a normal human tendency.  I’ve encountered some pretty rude people in my life.  I’ve been stared and pointed at countless times in my life.  Depending on where I am and who I’m with, I usually just kind of ignore it.  Sometimes, when I’m with my parents or sister, they’ll say something to the person, but staring and pointing doesn’t bother me much anymore.  When I was younger and was in school, kids would tease me.  Kids would call me “retard” and say things that did hurt my feelings, but I learned to brush it off.  Kids and adults still occasionally tease me today, but I’ve learned to take it in stride and try to overcome their negativity. 

Probably what bugs me most is when people treat me like I’m deaf or I’m a baby.  People talk to me in real high-pitched loud voice.  I’ve gotten pats on my head, pinches on my cheeks, and even kisses on my cheeks multiple times.  Again depending on where I am and who I’m with, I usually just kind of blow it off.  Sometimes, if I’m with family or close friends, they’ll usually try to explain that I understand everything they say, but sometimes no matter how many times people try tell them, they still do it.  Years ago, we had this elderly lady in church who came up to me every Sunday, talked to me really loud, and kissed me on the cheek.  It never failed.  After awhile, I just got used to it.  I’ve also had people insist on giving me things such as stuffed animals and stickers when I’m out in public. I understand when people do these kinds of things that they’re trying to be nice and aren’t trying to be hurtful.  That said, it does hurt inside and it’s really embarrassing—especially when out with my friends.  Most of my friends are used to it now, and we just laugh it off, but it’s still embarrassing!

I realize people have misconceptions because I’m in a power wheelchair and can’t talk.  I also know that I should use my communication device more to avoid some of the misconceptions, but, at the same time, today’s society should be used to differences.  Whether the person has a disability or not, treat them as normal as possible.  If you have a question, don’t be afraid to ask.  The person with the disability would most likely have you ask it rather then having the wrong assumption be made.  Don’t be afraid to say hi—- it’ll make things a lot less awkward for both of you! 

Though things are improving daily for people with disabilities, some people will never fully understand that we have the capabilities to lead fairly normal lives.  We, as people with disabilities, have an ongoing challenge to prove to the world that we can lead successful lives!

***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.

No matter how many years apart you are, how many kids there are, or how close of a family you have, if you have a brother or sister, there is going to be some amount of sibling rivalry.  Having a child who has special needs in a family doesn’t change that.  As I’ve mentioned in previous entries, I have a younger sister, Stephanie. We are four years apart.

When we were growing up, we fought and got in trouble just like other sisters would.  I’d pull her hair and run over her toes with my power chair, and she’d disengage my chair so I couldn’t move it and move things out of my reach!  Like all kids, Steph stole my clothes and used to tell minor fibs to our parents, and I would rat her out.  I wasn’t an angel either.  I’d get in trouble for something, try to blame it on her, and sometimes mom and dad would believe me! 

When children are growing up with a sibling who has some sort of disability, it may appear that the parents give more attention to the brother or sister with special needs.  It appears that way because a sibling with the disability may need some extra assistance with various tasks.  Though at times, it’s hard, the developmentally typical child will realize that just because mom and dad has to spend more time helping her brother or sister, it doesn’t mean that they love them more.  It’s realized that the extra attention that is given to the child who has special needs isn’t necessarily wanted, but might be necessary. Steph had to do a lot of stuff on her own because our parents had to take care of me.  An example I remember is when she was in 6^th grade, she went to Washington D.C. for chorus.  It was over her birthday, and my mom couldn’t go along because she had to stay and take care of me.

The difference in adult attention is not the only factor that affects sibling relationships.  The typical child may have to deal with issues and do some things that a “normal” brother or sister will never have to.  From going all around a building to find an accessible entrance to dealing with people who stare or treat their sibling wrong, the typical child adapts to a different lifestyle.  At times, it’s not easy, but it’s part of life for the family.  Steph also has had to explain my disability to her friends as well as defend me from people who make fun of me.  She also does some of my personal cares such as feeding me without even thinking twice about it.  Little ways of helping me have become automatic to her.

For the sister or brother with a disability, it’s not always easy either.  Watching their “normal” brother or sister accomplish things that they know they will never be able to do can be difficult.  When we were younger, it were things such as watching her playing in a soccer game, to doing simple chores around the house, to getting her drivers license and dating, that were hard to witness knowing I’ll probably experience those very normal things.  

Over the last few years, as we’ve gotten older, our relationship has changed. Much to no surprise, after attending hundreds of my therapy sessions when she was young, Steph became an occupational therapist.  She often tries to help me by suggesting some therapy techniques to make life easier for me.  Admittedly, being the older sister, I often have a hard time taking her advice seriously even though I know she’s right.  Steph too has to remind herself that she needs to be my sister first rather than a therapist.  We’re getting better at finding a happy medium.

Recently, we’ve entered a new phase of life as Steph became engaged to a wonderful man. As one would guess, this milestone isn’t the easiest for me to accept.  Don’t get me wrong, her fiancé is great and I’ve come to love him; it’s just that seeing my sister in love makes me wish it’d happen to me. It’s not easy, but I’m trying to experience happiness through her eyes.  I do my best to be as supportive as I can, but Steph understands why at times things can be hard for me emotionally.

I’m well aware too that it takes a special guy to marry someone who has a sister with a significant disability. Early on, I’m sure Steph had to explain my circumstances to him. Again, it’s not an easy conversation to have, but Steph did it because she loves me and wants me a part of her life forever. Her fiancé has accepted and embraced the situation which I’m forever grateful for.

Steph and I have started talking about the future—when our parents are no longer able to assist me with things.  I never ever want to be a burden to her life (and that’s something I’ll always be very cautious about), but Steph wants to be there for me when that time comes.  Down the road, I’ll likely move closer to her, so she can assist me.  “That’s what family is for,” she says.

I know having a sibling with a disability isn’t always easy.  Steph has sacrificed a lot for me, but she says it has made her stronger.  Words can’t begin to express how blessed I am to not only have her as my little sister, but also a best friend!

***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 something like, “you can’t choose your family, but you can choose your friends.”  As I’ve alluded to in past entries, I’m incredibly blessed to have an absolutely wonderful family but I’m also very fortunate to have awesome friends.  For some people who have disabilities, finding true friends can be challenging. 

For me, since I have pretty severe limitations, it was hard to get people to understand that I was fully cognitively aware.  This was especially the case when I was younger.  It really helped that I was completely mainstreamed from Kindergarten on.  Each year, more and more classmates got to know me.  Teachers and educational assistants were great about making sure students included me.  In fact, I remember my very first day of first grade (I had switched schools because my parents were building a wheelchair accessible house in a different part of the city), my teacher (who I ironically had for two years of Early Childhood previously) took me out of my chair and sat me on a bench with her where she explained my disability to the class. I think that really helped.

Over the years, I made many great friends in school. They got to know me and understand my needs.  Like most kids, I had many “best friends” during my elementary school years.  These friends understood me  (I’m mostly  nonverbal)  and didn’t mind helping  me with things like feeding  and driving my chair (not that I needed help driving, but it was a cool thing to do back then).  They saw past my disability.  I got invited to things like birthday parties just like my peers.   Most of the time, my mom accompanied me to parties to assist me.  I also had many birthday parties and sleepovers.  I was in things like Girl Scouts too.  My parents were all about providing me with opportunities to socially interact. 

My junior high years were interesting years for me.  Because of where we lived, I went to a junior high school than most of my friends from elementary school—including my three “best friends.”  I did make friends during those years, but I also kept in touch with my best friends.  When we went to high school, we were all back together and it was awesome.  As I mentioned in a previous entry, even though I never had a date, I attended every school dance with my friends.  I’m still close friends with these girls today.

When I started at UW-Whitewater, I vaguely knew three people.  I laugh at that now because I have so many friends from college.  UW-Whitewater was different in that since it specialized in serving students with disabilities, it wasn’t unusual for students with disabilities to become friends with other students with disabilities.  In fact, it was more common than not. It  took me awhile to get used to because in my high school, I was practically the only student who had significant physical limitations who was in all regular classes; so for obvious reasons, I did my best  not to  associate myself with  those with cognitive disabilities.  In college, though, since there was such a variety of students with and without disabilities, I learned quickly that it didn’t matter.  Actually, it was very apparent that it was natural for those with similar circumstances to become friends.  I became friends with lots of people who had various types of abilities.  We were there for each other when limitations got in our way, and we also pushed and encouraged each other to reach our highest potential.

At UW-Whitewater, I also quickly became friends with a different group of people—my personal care assistants.  Yes, the care agency tried to prevent it from happening because it was “unethical,” but it’s almost inevitable not to become friends with someone who is helping you with your personal care needs.   Most of my care assistants were students as well, so it was just like I was hanging out with friends.  Obviously, not all of my assistants became close friends (and that’s ok), but I had a great group of girls who had my back.  We’d hang out and do things outside of my shifts.  I’d try to be conscious not to “use” them to help me outside of my shift times, but, to them, it was no big deal to help me with things when they weren’t working—to them, it was like helping a friend.  Like many college students, we’d stay out late and those girls had no problem throwing me in bed when we got back.  The care agency eventually gave up trying to stop our friendship and loved how close we were. 

Four of us became super close and remain close to this day.  We don’t see each other as often as we’d like, but it just makes the times we do get together more special. Recently, my parents and I attended a wedding of one of the girls.  The four girls were back together for a mere few hours, and, on the way home, my mom said, “those girls bring out something in you that no one else can.”   She’s right.  I can only hope our friendship lasts forever.

I understand that being friends with someone who has a physical disability takes some extra effort.  As we get older, my friends have to explain my disability to their significant others and children.  I’m sure that’s not an easy conversation to have, but they do it because they love me and want to remain friends.  Their boyfriends/husbands and children always seem to embrace the situation.  To me, that’s true friendship!

 Where would I be without my friends?  Honestly, it’s a scary thought.  I can’t begin to imagine my life without them.  I’m so incredibly blessed that they chose to become friends with me!

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

Like many Americans, I recently watched the opening ceremonies of the Summer Olympics.  I enjoy watching athletes from all of the different countries march in and listening to stories of the athletes.  Gymnastics, swimming, and diving are my favorite sports to watch during the Summer Olympics. 

Many people don’t realize this because they don’t get near the amount of media coverage that the regular ones do, but there are Olympics for people who have disabilities too.  The Paralympics are for people with physical disabilities and the Special Olympics are for people with cognitive disabilities.  People who participate in these are athletes just like people who participate in the regular Olympics.  Just like regular Olympians, these athletes spend countless hours training and competing.  In my opinion, it’s a real shame that the Paralympics and Special Olympics aren’t televised.   There are petitions going around on the Internet to try to get them televised, so maybe in the future, they will be!

Although my physical limitations are too severe to participate in many adaptive athletics, sports have been a part of my life ever since I was young.  My family and friends are avid football fans.  Each season, I setup and run a family football pool.  If there’s a NFL game on (doesn’t matter which teams are playing), chances are that I’ll be watching it.  I also follow college football and basketball pretty close too.  I absolutely love attending sporting events as well.  I’ve been to one pro football game and a few Badger football games.

In high school, I rarely missed a football or basketball (both boys and girls) game—home or away. I think by being a spectator at them, it helped my classmates accept me.  In fact, my senior year, I was invited to the Senior Sports Awards Banquet.  I received a sportsmanship award.  It’s a memory I will always treasure.  At UW-Whitewater, I continued to attend many of the football and basketball games as time allowed.  I also attended most of the wheelchair basketball games while I was there.  They have both a men’s and women’s team now.  I know the men’s team has won multiple national championships, and I think the women’s team is also pretty good.  It’s a pretty amazing sport to watch!

Growing up, I also watched my sister participate in various sports such as soccer and swimming.  Just as she attended hundreds of my therapy sessions, I attended hundreds of her soccer practices and games.  As she has gotten older, she has done some marathon and triathlon type events. She has expressed interested in sometime doing a race or something with me.  Many people with disabilities participate in various types of races with the help of a partner who pushes or pulls (in biking and swimming events) the person along.  My Team Triumph is a big organization in Wisconsin that pairs persons with disabilities up with a partner (they call them angels) who is willing to help.  While this is a great opportunity for some, personally, I wouldn’t feel comfortable participating in something like this.  I’m not comfortable highlighting my disability like that.  I think it’s great that people are willing to do that for others, but I would feel too awkward being in the spotlight for something I didn’t do.  People will disagree with me on this and that’s ok; I respect your opinion.

Although, I’m not able to physically participate in athletics, I think it’s good for me to actively follow sports. It’s a good way for me to socially connect with people.

Who’s ready for some football?!?!?!

***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.

Places such as Six Flags and Noah’s Ark are popular for many families.  Amusement parks and theme parks are usually fun relaxing places for most people.

That isn’t the case for people with physical disabilities.  Rollercoasters and many other rides aren’t accessible.  Even if I could get on a ride with assistance, because of my poor head control, I’m not allowed on most rides.

When my sister and I were younger, we did the Disney parks in Orlando, Florida.  We did a different park almost every year.  Disney is actually pretty accessible.  They do all they can for people with disabilities.  People with disabilities and their families are automatically moved to the front of the lines. I don’t agree with this policy for the most part. It made my family and I feel a little embarrassed when we were escorted to the front of lines when sometimes literally hundreds of people had been waiting hours for a ride or an attraction.  We didn’t feel right that just we got to go first just because I have a disability. 

In recent years, Disney has come under scrutiny regarding the policy. They’ve had issues with identifying people with disabilities and some people faking having a disability just so they could get to the front of the lines.  I believe there are some special circumstances where people should be granted the privilege of being at the front of the line.  When an individual is terminally ill and time is literally of essence, I believe they shouldn’t have to wait in lines.   I also think that there some unique circumstances when people have a very hard time waiting because of their intellectual disability.  I’m not sure how Disney (and other theme parks) can police this.  Maybe people get a note from their doctor and then get a card when they arrive at the park that identifies that they need that privilege.  That’s just my idea.

My family loves to go to Wisconsin Dells.  We love to swim.  Waterparks aren’t very wheelchair friendly. We went to Family Land (now Mount Olympus) quite often when we were little.  It was less hilly and a little bit more accessible than Noah’s Ark.  The wave pool and lazy river are my favorite!  The waterslides are really hard to access.  There are usually steep hills and stairs up to them.  I remember when I was really little, a few times my dad carried me up, handed me to my mom, he went down first so he could catch me when I came down with mom, and then I went down on mom’s lap.  That only happened a few times though because it took a lot to get me up there.  I absolutely love the wave pool because I can sit in an inner tube by myself and ride the waves.  Someone has to be right next to me in case the tube flips, but I just love it!  My parents and I recently went to Mount Olympus again for the first time in 10 or 15 years.  I was surprised that the accessibility hasn’t improved much.  In fact, in my opinion, it has gotten worse from how it was years ago.  Sure, they have accessible restrooms and changing rooms, but with all the new attractions and rides they’ve added (very few of which I could enjoy), it’s much more hilly and hard to get around.

I understand that when most amusement parks and waterparks are developed people with disabilities aren’t normally thought of as prime clientele, but we enjoy and deserve to have fun with our family and friends too.  I’ve recently read about how some amusement parks are becoming more disability friendly.  One theme park in Tennessee added a sensory room for those who have sensory disorders.  Other parks are making similar accommodations. To the best of my knowledge, there hasn’t been a wheelchair accessible rollercoaster made yet.  If there ever is, though, you can bet I’ll be the first in line!

Do I wish I could go on every ride just like everyone else?  Of course I do.  I would love nothing more than to be able to go to Six Flags for a day with a bunch of friends, but that’s just not possible.  I figure life is full of enough rollercoasters I can ride!

***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.

Everyone has stress.  There are multiple causes of stress.  Stress is a normal part of life and is even healthy to some extent.  Like everyone else, people with disabilities have stress.  In fact, I’d even bet we have more stress than the average person.  For me, personally, the past nine months have been very stressful.  Unlike many of my “normal” friends, I’m not worried about things like getting engaged, planning a wedding, having babies, or buying a house.  Instead, I’m worried about things like if my caretaker is going to show up to help me out of bed in the morning, help me use the restroom, or feed me meals.

Back in October, I wrote an entry about how I had to change care agencies because of the rule prohibiting people to hire third-party vendors through IRIS Self-Directed Personal Care (SDPC).  At the time, for many reasons, I didn’t want to take on the responsibility of hiring and scheduling my own staff; therefore, I found and switched to an agency that billed Medical Assistance.  Like I said in my previous entry, it was quite an adjustment because I had to get used to and train all new people.  When I wrote that entry, I was trying to be patient and give the agency time to figure things out.

In the nine months I had the agency, nothing has changed.  It was a complete nightmare.   For obvious reasons, I’m not going to disclose the name of the agency, but I’ve just had a multitude of problems with them.  From staff being late and not showing up for shifts, to having inadequate staff (on multiple levels), to not having a functional backup or on-call system… the list goes on and on. 

In winter, things got so ridiculous one weekend that I did something I’ve never done in all of the years I’ve had care agencies.  I asked my parents to come get me because I couldn’t handle it anymore—I was so frustrated!  Admittedly, I lost my patience.  After that, the agency promised that things would change, but really never did.  In fact, things got worse.  In addition to the issues I listed above, I had problems with theft and having untrained staff come in.  My parents and I tried to work with the agency to try to improve things by offering to do trainings, etc…, but nothing seemed to help.

By the end of March, I was down to have one person doing all of my shifts.  I have 28 personal care shifts and two supportive home care shifts per week.  It’s crazy to have one person doing all of that.  It was unhealthy for both the staff and I.  Plus, I had absolutely no backup staff.  The agency kept telling me that they were working on hiring more staff, but nothing ever came of it.

I began researching different options.  Basically, I found out my choices were very limited as there are very few care agencies in Oshkosh that bill Medical Assistance.  The agencies that did were known to be even worse than the one I had.  I even looked into the Managed Care Option (MCO) to see if I went on that (instead of IRIS) if I could go back to my previous care agency, but, as it turns out, that agency isn’t listed as a “personal care” agency under the MCO.

I was very hesitant about the hiring my own staff because I wasn’t too keen on all the responsibility that comes with it.  However, after talking with some of my friends who have been doing it for years, I decided to give it a try.  I wrote up an ad and posted it on Facebook a few times.  Friends shared it on their pages, and, amazingly, I got quite a few responses.  My mom helped me make some calls one morning, and we were able fill my whole summer schedule in a matter of hours.  I then met with my IRIS consultant and nurse to get the paperwork started.  I also met with each employee to do paperwork.  I’ve had a few hiccups with people (former agency staff) not passing the background check, but, again with some quick Facebook posting, I was able to find some new people.  I realize that hiring and scheduling people is going to be on-going responsibilities in my life now, but people tell me I’ll have much better luck. Only time will tell, but I’m excited to start this new chapter of my life!

So, while I may not stress about the same things that most of my peers do, I certainly do have stress. I’ve realized that stress about finding care staff is going to be part of my life.  I will do whatever it takes to live as independently as possible!

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

For the last several years now, every spring, I’ve been asked to present to a special education class at a local high school.  My mom is an administrator in the school district and she likes to have me speak to students as motivation. I talk about my life living with a severe physical disability and how I overcame and continue to overcome the many challenges I face.  I tell them about growing up and going away to college. I share some of the funny experiences I had and how I persevered through tough times. My message to them is to never ever give up no matter what life throws at you.  Oftentimes, I also talk to Kindergarten classes.  At that age, it’s about exposing them to someone with a severe physical disability and having them not be afraid. I get some pretty funny questions from those kids!  In the past, I’ve also presented to college classes.  Education majors usually have to take an intro to special education course, and, since I wasn’t the “typical” student, my story is from a different perspective. 

Maybe it’s because teaching is in my heart and soul, but I admit that I absolutely love presenting to others.  While, personally, I don’t take offense to being called or seen as an inspiration, many people with disabilities do.  To me, I feel like it’s my underlying duty to inspire people. If people are inspired and encouraged by seeing me lead a successful life despite all of my circumstances, I’m all for it.  They may not like it, but I’m inspired by my friends who have different abilities.  I guess, personally, I just don’t see the issue with being seen as an inspiration.   

That said, most of time, I don’t want to standout just because I have a disability.  I know that sounds contradictory.  Let me try to explain.  Nobody likes to have attention drawn to their flaws.  While I like to present about living with a disability, on an average day, I don’t think about my disability. I don’t want to be seen as an inspiration just because of my disability.  I want people to be encouraged by how I deal with my limitations.

Sometimes, I think disability awareness and advocacy is taken too far.  For example, I have mixed feelings about disability awareness days.  Days such as “World Down Syndrome Day,” “World Cerebral Palsy Day,” “Epilepsy Awareness Day,” and “Autism Awareness Day” are at the end of March and the beginning of April.  On one hand, bringing awareness to disabilities is a great thing. The more ways we can get society as a whole to accept and include people with disabilities the better. On the other hand, though, wearing a certain color and/or a pin (which is often suggested on these days) isn't going to cure these disabilities. In fact, as I said, drawing attention to a person's disability is--in most cases--the last thing the person wants.

The notion of “inspirational porn” has been a controversial topic on the internet for awhile now.  It’s when media outlets commend and do stories about people with disabilities doing “normal” things. Again, I have mixed feelings about this too.  While I agree that some stories seem excessive, I think it’s important to share success stories about people who have disabilities with the general population. It promotes acceptance and inclusion.

I think it’s a very fine line between educating about disabilities and exploiting disabilities.  There’s no rule book for this, so we are left to figure it out as we go.  Many people disagree with me on this, and that’s ok.  We are each entitled to an opinion!

***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 they admit it or not, most people daydream at least for a few minutes each day.  We daydream about lots of different things.  I’m not sure this is common among people with disabilities or not, but, sometimes, I catch myself thinking about the “what if” question. What if I didn’t have Cerebral Palsy?  How would my life be?  I candidly admit those questions go through my head too often.  Questions like those run through my head especially when I’m having multiple problems solely related to having a disability which are preventing me from a “normal” life.  I also find myself pondering about those thoughts when I witness friends and family members reaching significant milestones in life that will likely never happen for me.  I hate when I catch myself asking those questions because it does me absolutely no good.

Cerebral Palsy (CP) is a condition that appears in infancy or early in childhood that affects a person’s body movement, muscle coordination, and balance.  It’s often caused by a lack of oxygen to the brain. Due to complications during birth, I was without oxygen for eight minutes. At one point, I was given my last rights by a minister and was even pronounced dead. Doctors were able to revive me, but due to the lack of oxygen, I was diagnosed with Athetoid CP when I was three months old.  CP isn’t a progressive condition—meaning it doesn’t get worse (or better) with time.  Treatments, such as therapies, help enhance the person’s quality of life, but, currently, there isn’t a cure for CP.

I’ve always been thankful that I’ve never experienced life without limitations as opposed to acquiring a disability after living life without one.  I was born with CP, so I’ve never known life without it.  I think it would be much harder to acquire a disability after living without one for any amount of time.

In many of the Facebook groups and online disability forums I belong to, a common question that frequently comes up for discussion is, “if a cure became available for disability, would you take it?”  Unlike many people, I think I would take the cure for CP.  Many people say that their disability is a part of who they are.  I respect that, but, for me, that’s not the case. I’ve always said yes, I accept I have CP, but it doesn’t define the person I am.  Of course, I’d have to take the risks and side effects into consideration, but, for that reason, if a magical cure became available, I think I would take it.

Albeit, “being cured” is almost impossible to even fathom, but admittedly it’s something that does cross my mind fairly often. I imagine who I’d be, where  I’d be, and what I’d be doing if I didn’t have CP.  Of course, my imagination is likely not very realistic because I dream I’d have the perfect life, but I know that wouldn’t probably be the case—nobody has a perfect life.

Although, I’m not an overly religious person, I do believe that there’s a reason I was brought back to life after eight minutes. I don’t know that I’ll understand the full reason as to why I was revived and given extra challenges while I’m here on earth, but I believe someday that I will find out. I’m slowly finding out that two of my purposes in life are to advocate for people with disabilities and to encourage others to persevere no matter what life hands you. I’m sure that there are more purposes, but those two seem to be most prevalent.

When those “what if” and “why me” questions start floating around in my head, I try my best to think about my purpose in life.  It’s definitely not easy to do, but I realize that I may have a different purpose in life than many of my acquaintances.  I’ll likely never do things like get married or have kids, but that’s ok because I’m meant to do other things like educate people about disabilities and encourage them to never ever give up.

Science is getting closer and closer to finding cures for many diseases and conditions.  Maybe not in my lifetime, but, someday, I believe there will be a cure for CP.  Until then, we have to try to make the best of the abilities we do have, and, live life to the fullest. 

"I'm a person that just happens to have a disability, but that doesn't mean I'm a disabled person." ~Marilyn Gould

***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.