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The Grey Areas of My Body Image

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Let’s talk about everybody’s favorite topic: body image. I hope that you could sense my sarcasm in that statement, so please know that I am being so sarcastic there! Body image is by far one of my least favorite topics to discuss. But it needs to be discussed. If you have found your way to this blog, you may be a parent to a disabled child, you may have a disability yourself, or you know me personally and want to see what I have to say. I would like to discuss the topic of body image when you have a disability. It is not as black and white as you think.

First off, I would like to make it clear that I think having a physical disability is one of the most beautiful gifts in my life. It forces me to think differently every day because I frequently have to adapt to my surroundings, and it has given me the ability to be a great empathizer. My physical disability connects me to so many wonderful people, and it is truly an honor when people reach out to me and tell me that I have influenced them in a positive way, or that they have discovered hope for their disability through my writings. I cannot completely express how humbling and amazing these connections are, and I hope that nobody is ever shy to reach out to me. You can always reach out to me. I appreciate it more than you will ever know.

I accept my physical disability for what it is. I know that I cannot change it or who I am, and I do not want to. I do not get caught up in the negativity anymore of completely despising my body. But, I still have days when my sub-conscience overrules my being and I believe that nobody else will accept me for who I am.

Let me introduce myself. My name is Jessica Paciello, and I am a soon-to-be 21 year old currently attending college to become a pediatric physical therapist. According to medical definitions, I am also physically disabled. I was born in May 1995, and I was immediately diagnosed with congenital hydrocephalus at birth. My diagnosis of mild hemiplegic cerebral palsy, which is definitely the greater and more challenging of my two evils, would follow eighteen months later. However, at two days old, I did have to undergo brain surgery to implant a shunt that drains from my brain’s ventricles, down my neck, all the way through my stomach, and into my abdomen. Basically in laymen’s terms, I had too much “water” (cerebrospinal fluids) on my brain, and that can cause serious health complications if the problem is not surgically corrected. When I inform people that I have undergone brain surgery, they freak out. That’s understandable, but on the scale of neurosurgical procedures, shunt surgery is so common and it is one of the easiest brain surgeries. I was never scared of it, and I am still not. The brain is the most intriguing organ to me. In fact, if I was not physically disabled, my dream job would be to become a neurosurgeon. Anyway, I want to give you a little bit of background about me so you can understand that growing up, I took viewing my body in a positive way in strides. However, I really am not ashamed about being disabled. I fully understand that every single person on this planet has their own unique story, and my story just includes a lot of medical talk and doctors’ visits.

Fast forward eighteen months after my birth, and the words “cerebral palsy” were discussed for the first time. Doctors explained my formal diagnosis of “left-sided hemiplegic cerebral palsy” to my parents. This is still in conjunction with my hydrocephalus. Neither diagnosis goes away with time. They will both stick around with me for the rest of my life. Hemiplegic cerebral palsy means the left side of my body, specifically my arm, leg, and trunk are significantly weaker than the right side of my body. I have full mobility in the right side of my body. Some activities that are harder for me to accomplish because of my CP include: typing (I am almost always solely typing with only my right hand), wiggling my left toes, and I walk with a little bit of a limp. Oh! And it sounds silly, but I cannot properly form a “peace sign” or “thumbs up” with my left hand. Sometimes, the littlest tasks like those frustrate me so much. I have rejected dinner dates with guys before as “first dates” because I cannot properly cut my food at restaurants in “normal” fashion. I cannot hold a knife in my left hand and cut my food. If you have ever asked me to grab a bite to eat before, I am so sorry that I laughed in your face. It is just a defense mechanism because restaurants are such a source of anxiety for me.

There are many more challenges I face because of my CP, but those few are the first that come to my mind right now. Growing up, I understood that because of my disability, my body had a “good side” and a “bad side”. There have been so many times when I had overcompensated for my “bad side” and I just did not want to use my left side at all. As a teenager, I felt very self-conscious about my disability, and I felt very alone because of it. I am the middle child and I have two sisters. I always compared myself to them, and I always knew I looked like the odd one out because of my physical conditions. Now at 20 years old, I actively try to change my pattern of negative thinking about my body, but I would be lying if I said that is always so easy. I am opening up about this issue because I know that I am not alone in the struggle of worrying about body image. Summer is just around the corner, and I just want to press fast-forward through this season because it means the scars on my body will be more visible to people. I know that my scars are overall a sign of strength that show all that I have overcome, but there are still so many days when I just want to hide from the world because I feel like it is not accepted. I trace my fingers down my skin, and there are more scars than I can count. I have avoided going out and being as social as I want to be in college because sometimes I still cannot shake the feeling of how down I get about my body, and during these times all I want to wear is loose baggy clothes so my arm and leg are hidden and not highlighted.

Positive affirmation is a funny concept when you have a disability. I frequently get called “pretty” by friends, family, guys, and strangers. I do not say this because I want attention or anything like that, but I need to make a point. I strongly believe at times that because of my physical disability, I am not any of the compliments people call me. It is hard to get out of my head sometimes. I am my biggest critic. I have such a hard time trusting people who say nice things to or about me, and I want to own up to that fact and apologize to any person who has been kind to me and did not receive a proper thanks. I feel imprisoned in my body some days because half of my body works perfectly and the other side does not. It is hard for me to believe that people find that “pretty”. But I really am trying to be more positive every single day of my life. I am trying to be kinder to myself, and kinder to my body. I am trying to be kinder to those who are kind to me and those who do not get frustrated with me, because they truly understand that positive affirmation is so difficult for me to wrap my head around.

Having a physical disability is very much a learning process every single day of your life. You will not magically understand your body and your perceived limitations overnight. I am still learning about my body daily. I want people to know that people with disabilities do not need or want your pity. I do not need pity. I do not want pity. I hope for understanding however, and that also begins with me understanding myself and owning up to my body image issues.

I know it will get better. Again, I am not ashamed of my physical disability. I would not know who I am without it, but I do know from personal experience that it can at the same time lead to confusion every single day. You can like and accept something that is important to you, but at the same time believe that nobody else will understand it fully. Not everything is understood in black and white terms. Life is full of grey areas. I want you to know that it is okay to be confused about your body. It is okay to be frustrated at times. It is okay to be honest. 

They say there is beauty in vulnerability. I hope they are right! XO

Dear Cerebral Palsy, Thanks for Everything…

Annie now & then

Dear Cerebral Palsy,

Hey there, friend. I can’t believe It’s been 21 years. Starting from the days in the NICU, now in my third year of college and here you are, always sticking to my left side. Years of stretching, physical therapy, injections, leg casts, and braces, were all focused around helping improve the strength, flexibility and gait. But I would have never thought that having you with me physically would lead me on such an incredible path of self-actualization. I consider myself really lucky; not everyone comes to understand what place a chronic condition can hold in their lives. At 17, I felt shadowed by you. But now at 21, you make my life brighter! So I felt the need to say thanks… for everything.

Thank you for helping me understand my body, my challenges, and my personal goals. Without you, I would have never learned the values of compassion, courage and perseverance. CP is the one thing in my life that has been with me through every endeavor, and I truly believe that this is what has given such a deeper meaning to many of  life’s experiences. While I can only speak based from personal experiences, I do not consider you as a disability. Yes, I understand that Cerebral Palsy technically fits into this category, but for me it’s a stretch (no pun intended). I rarely need to take advantage of, let alone qualify for accommodations. And let’s get one thing straight…I am not “differently-abled” as some campaigns like to call it, and I definitely do not “suffer from Cerebral Palsy” When things don’t feel comfortable for my body, I adapt. And yes, I’m weary about asking for help. But I’ve learned to speak up for myself! No one knows my body better than I do! I’ve come to terms with the fact that I may be better off avoiding ice skates, that stilettos probably won’t find a place in my closet, and that I’m going to fall over cracks in the sidewalk every now and again. Patience is important. And of course, making make my entrance into the world 7 weeks early, I’ve never exactly been the patient type! Thanks for teaching me how to take life one day at a time.

Sure, I have days I wake up with my leg muscles so tight and fatigued that I’m convinced I’m an 81-year-old trapped in a 21 year old’s body. Adding any kind of cold weather or uneven terrain to that equation takes the discomfort to a whole other level. My condition will never change, but my symptoms often do! Everyone says it’s unhealthy to stretch to the point of pain, but just extending my legs out can be agonizing sometimes. And I’ll never forget my senior year of high school, having bags of ice wrapped around my leg daily because of the regular muscle spasms.  Senior year comes with so many expectations, but it felt as though my body was betraying me. As a teenager, I was guilty of letting a lot of negativity go to my head, and for a while, I couldn’t fathom the thought of having Cerebral Palsy for the rest of my life. Performing on my high school stage didn’t make any of this easier either. I often felt like my best wasn’t good enough, and I know a lot of those feelings stemmed from a deep place as a little girl. I crossed paths with more than one choreographer who have flat-out said that my C.P. got in the way of them being able to teach me. But the last time I checked, my leg doesn’t affect my ability to understand how hurtful words can be. Not everyone is going to be open-minded, and that’s okay. Thanks for allowing me to experience pain, criticism, and even rejection. I can’t control what people think about my  abilities, but I can control my attitude. In living with CP (or any chronic condition for that matter) perspective is key. I don’t want to look back on my life knowing I woke up every morning frustrated by my body. Every person is in control of how they feel, regardless of what life throws at them. It’s a choice. I’m glad I choose optimism.

Thank you for helping me realize how incredible my parents are. From day one, their unconditional love and encouragement has served as my saving grace. My mom, the woman who always reminded me that living with a big heart will take me farther than any physical ability. She devoted many hours to making sure I was able to complete my home program of Physical Therapy with incredible patience, even on the days where I would grumble and whine. My Dad, the guy who always reminded me to face my challenges with hustle and heart, and who comforted me through painful procedures, telling me to was okay to howl as doctors injected the back of my leg. Mom and Dad were the first to console me as I awoke from each of my five surgeries, and made sure chocolate milkshakes soon followed! Together, they have pushed to give me the best life possible, insisting nothing took precedence over getting my education, and making sure that I stayed on a mainstream track in school where I belonged. Decisions like these are ones that have helped me reach my full potential in life. From day one, they have taught me and given me more than any other two people on the planet, and I love them so very much.

Most of all, thank you for helping make my dreams come true. This May will mark two years since my tendon release surgery. To be honest, an operation didn’t phase me at all-I was excited! I will never forget the morning I stood up from my hospital bed and began my trek down the hall. With every step, it was as if all my doubts were disappearing behind me. It’s so hard to explain the joy I felt in that moment. My soul was happier than I ever knew it could be. I am incredibly thankful that my surgery became all I’ve ever wanted. The way I walk will never truly be perfect, but in a way, it has become perfect to me. To know the feeling of dream come true is indescribable and gave me the confidence to pursue other dreams as well. I didn’t think my surgery could be topped by anything, but when I got the news from Chicken Soup for the Soul that they were publishing my piece in their book, Think Possible, I was more excited than ever!! Being able to share my story with the world about being a seventeen year old performer with CP (and a major side of insecurity) was eye-opening and a real honor. Over the past few years, you have transformed from my biggest insecurity into my greatest gift. And I know that I am not alone. I  have had the ability to form instant bonds with people who know what it’s like to live with CP.  Together we’re unstoppable! I want to be a part of spreading hope that living with a chronic medical condition can, in fact, be a blessing in disguise.  My dear CP, If I know one thing for sure, it’s that I wouldn’t be the  person I am today without you…literally always on my side.

Much Love,

Annie

“Give a girl the right shoes and she’ll conquer the world” – Marilyn Monroe

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Hi everyone,

I’m Jessica and I’m 23 years old. I was diagnosed with Cerebral Palsy when I was 4 months old in a unique way. I got pneumonia which caused one of my lungs to collapse. When that happened I lost oxygen, and as all of us know thats one of the ways to get CP. I was placed in a coma for a week, and eventually I became healthy again. From a young age I had to become a fighter. Cerebral Palsy has a funny way of forcing you to get thick skin. Eventually you learn to let the looks and comments roll off your shoulders, because in my head those people who say things don’t matter. I have a mild case of CP that affects me from my waist down on both legs. I got the percutaneous lengthening surgery twice. Once for my hamstrings and the other for my achilles tendon. The surgeries were life changing for me, it gave me a chance to have loose muscles along with stretching everyday. Also for the past two years I have been getting botox injections in leg muscle to help with my spasticity. Im loose and flexible now with very little spasticity but still walk with a limp.

When I was young I never thought twice about it, I never knew anything was wrong until kindergarten. My Cerebral Palsy never held me back, I did everything I wanted to do. It might have taken me a little longer, but I did it and thats all that matters in the long run. I pretty much came to terms with all things related to Cerebral Palsy, Physical therapy, stretching, gate training, strengthening exercises, but the one thing I can’t come to terms with is SHOES! I’m sure you all can agree with me having CP and shoe shopping is not fun! It’s the one type of shopping I dread and try to put off. After having years of experience of shoe shopping with CP I think I got it down to a science. I have some shoes & tricks that I want to share with you all.

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Sneakers– I am definitely a Nike girl! Although I am picky with the weight of the sneaker, I usually get the sneakers used for running, I find that these are not to light but not too heavy. Right Now I love the Nike Dual Fusion line.

Slippers– Even though slippers are meant for comfort it’s still important to keep your feet in the right position all the time. I am in love with the brand Vionic! They have an arch and a heel cup, they are made for people who need medical footwear. I have the Relax Luxe they are my favorite.

Sandals– I’m definitely the most difficult with sandals, It took me a while to feel comfortable and confident in them. I have two brands that I will only wear they are Bare Traps & BOC. For me finding a sandal with a sneaker like bottom works best. I also make sure the sandal has a ankle strap for extra support. When I walk in the BareTraps & BOC sandals it’s almost compatible to sneakers.

Sandal Tips– I hate when my foot slides around in my sandals.It is impossible to wear an orthotic with some sandals. My fun tip is I buy the Dr. Scholls gel heel cushions and trim them to fit my shoe then glue them to the inside by the heel & the toes.

Boots– Again I have to say I love the brand BareTraps & BOC for boots. If I do stray away from those brands I always make sure the the boot is flexible & has a rubber bottom so you don’t slip! Again I look for that sneaker like bottom for comfort & I make sure I can slip in my Orthotics.

Heels– Wearing heels is a struggle but lets be real having CP and balancing on a stiletto is out of the question for me, and thats something that took me a long time to accept. I would give anything to walk in heels and be confident and comfortable, but thats not always the case. I am not a toe walker so feeling the pressure of being pushed onto my toes gives me anxiety, I feel like I’m going to topple over. As of right now I only wear a heel with boots or booties, I normally wear a low heel about 1 inch to 1 1/2 inch. I make sure they have a rubber bottom and is a flexible shoe. Right now I have the Kenneth Cole Women’s Riding Boot. I love them and I’m very confident in them, and thats all that matters. I recently have been gate training in wedges so I can wear them outside and not only in the comfort of my house.

Orthotics– I wore day and night AFOs until I was 17 years old. I am now able to buy over the counter orthotics. I wear them in every shoe except for sandals. Two of my favorites are Vionic and Spenco.

Now, I am definitely not a Doctor but these are just some shoes and tips that work best for me. Also I would like to thank Katy for making this blog, it’s always nice to relate & talk to people who are going through the same thing as you!

xoxo Jessica

To Surgery…And Beyond!

Hi TeenCP!! I’m so excited to be back and writing about my latest excitement. I am now finishing up the final months of my freshman year of college and have been introduced to the medical opportunity I’ve always dreamed of!

All my life, I was told that I had Spastic Monoplegia (a.k.a  tight muscles only in my left leg, complete with a limp, and balance problems that were given to me shortly after I was born) But a few weeks ago when I visited with a new surgeon, I was given a new look into really how my leg muscles were moving. It has been my goal in the past few years to reach my full potential physically and now, I was finally getting what I saw as the chance of a lifetime. Back in January, I did a “Gait Analysis” at a special lab in New York City. From this, the doctor would be able to see how exactly my muscles move and then decide what course of action to take so I can walk as well as possible That day was actually pretty cool-therapists covered my entire body in little ball-shaped sensors and used 3-D Motion Capture cameras to film me as I walked back and forth across the room. It was unlike anything I’ve ever done before, and what was even more awesome was the fact that I was utilizing the same basic technology that filmmakers use to shoot movies like The Polar Express. (Fun Fact: That’s why Tom Hanks looks extremely similar to his animated character!) As it turns out from the results of the gait analysis, my Cerebral Palsy can actually be considered “asymmetrically diplegic” because my right hamstrings an adductors are also abnormally tight. It was definitely a shock to have my diagnosis changed a bit after 19 years, but to be honest, it didn’t really bother me! Just hearing that a doctor could help me walk better was basically some of the best news of my entire life. Yes, I am actually excited about the surgery that I will be having at the end of May.

For the sake of keeping things “even” both of my legs will be operated on. My hamstrings and adductors will be released, meaning the doctor will “snip” them allowing them to relax. Together, this will not only give me better flexibility, but also prevent “scissor gait” and the turning in of my knee on my left side. Also, my left achilles tendon will be lengthened (by cutting the outer sheath of the muscle, allowing the tendon to expand) and this will help me walk “heel-toe” with a more regular stride. In total, five of my leg muscles are going to be operated on, and surprisingly I will be leaving the hospital with the ability to walk (using a walker), a short cast on my left leg, and splints to wear at night while I sleep. There’s going to be lots of Physical Therapy involved (of course) but I look at the process with a “no pain, no gain mindset” This Jersey Girl is hoping to be back on the beach as soon as I get my cast off…even if it means trudging through the sand with that new walker of mine! (How’s THAT for PT??) Also, I’m hoping to be able to eventually go ice-skating and zip-lining (two things I’ve never been able to do but have always hoped to try) once I gain my strength back! I like being able to look forward getting on the rink at Rockefeller Center or climbing to the top of a tree then flying through the air. It may sound a little crazy, but no one ever said that when you have CP, you can’t do these things!!

Since I’ve gotten the news that I’m finally able to have all of this surgery, I’ve done a ton of reflecting. How are you supposed to react when the thing you’ve dreamed about your entire life suddenly comes true? I now feel this awesome new sense of confidence and readiness to take take control of my body that I hadn’t necessarily recognized during my high-school years, and I think that’s one of the reasons that I’m not anxious about what’s in store for me. Maybe to those of you who have gone through this process before, I could be sounding slightly naive…but I can’t imagine being afraid of a medical  journey that basically encompasses all I’ve ever wanted for myself. One of my favorite quotes is, “Worrying is like a rocking chair, it gives you something to do, but doesn’t get you anywhere.” I know that with  all the support I have from my family and friends, lots of determination and a couple of chocolate milkshakes, I’ll be able to conquer this journey and come out not only feeling stronger physically, but mentally as well. Throughout my teenage years, I’ve learned that the difference in how you feel about yourself and your future all depends on how you look at things. More than that, I’ve been re-inspired to never lose faith that everything will fall into place. Just thinking about the day when I’m completely finished with my rehab and walking in a brand new way gives me butterflies-it is all the motivation I need!!!

Keep on keepin on guys!! 🙂

-Annie

Cerebral Palsy & Fulfillment

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Lance Pounds is a Law student in Boise Idaho. He has consulted for Oregon Health and Science University as a disability advocate and interned in Washington D.C. In his free time, he likes to hike the foothills near downtown Boise and travel.

This article on TeenCP is about fulfillment in the lives of young people with Cerebral Palsy. I believe it is vastly important to reflect upon our own lives at any age, but especially during young adulthood because there is always something to be learned or gained from any struggle that we face. Many of us with CP at times, have had some significant emptiness inside of ourselves and do not know the reason for this. When I speak of fulfillment, I do not speak of fulfilling employment or an intimacy that is shared by a partner. Many people, disabled or not, have those fulfilling aspects of their life and still feel a kind of dark emptiness. Fulfillment is a life affirming and wide reaching essence that (1) builds up our self-esteem and self-worth (2) makes us content and happy in any stage in life through the self.  In the way I speak about fulfillment, it cannot be achieved through material or relationships; but instead; we find fulfillment through an intrinsic motivation that urges us to search for people, places, or things that will help us feel fulfilled by allowing us to have an identity in them. It is the ability and the will to choose. Perhaps, this comes from building a digital CP (online) or actual CP community that we can become a part of to gain a sense of our self-identity.

It is safe to say that everyone feels powerless or misunderstood in his or her own life at some point. We, as humans, may experience our own set of insecurities; ours might just stem from our disability. The irony is not lost on philosophers or social scientists that it is natural to feel that when we get everything we want, we seem to want more of it, or want what we cannot have. But this essay is not about a critique of modernity, or psychology. It is meant to be a guide for people with Cerebral Palsy who do not have the luxury of living inside the norm or even, with independence. This guide points to a community of peers, like this one here and many likes TeenCP. We cannot resort to society’s definition of fulfillment because we are not fully ingrained in society. It is a literacy all of our own creation and application. We can, however, make our own crippled community and feel fulfilled  within this community of people with CP.

Walking differently, experiencing difficulty with speaking, being dependent on a mobility device such as a wheelchair ultimately sets us apart with each difference, however small. Most of us are dependent on some others for some kind of care. Most of our friends and family members do not have these types of significant impediments in their own lives and can only understand what we go through to a certain degree. What kind of life can we achieve if we are dependent on others for survival?

Not a very promising one—at least that is what many people might think. I believe otherwise. I know it is possible to function in life, and be happy and successful! For hundreds of years, people have judged, mocked, and deemed abject, those who do not appear or move with the same amount of symmetry and precision as other human beings.  One would think that with the 20th century advancements in medical technology, this bias towards arbitrarily notions about able-bodies vs. limited bodies would be discarded in favor of a kinder philosophy but it is not. It is easy to feel different, to feel inadequate, weird, and frustrated about our bodies because we were raised in a world where people with disabilities are not held with the same regard as anyone else who does not deal with any sort of difference. These societal norms and ideas about “lesser” bodies hinders a healthy development of self-esteem and self-confidence that one hopes to attain into their adolescence and well onto adulthood.

Self-actualization may not be realized or attained as easily when the person has a physical disability which cannot be changed or made better.  How do we define our lives when doctors view us as unfixable beings? We are in possession of  weak bodies that last for an indefinite period of time? Doctors provide magnificent services that allow us to be more independent; yet, in my opinion it is hard for them to look at the disability and the person co-dependently of each other. Some parents worry too much, some parents don’t worry enough—and it becomes more and more difficult to gain a healthy about of happiness when we are constantly in conflict with ourselves and those around. Sometimes, our caretakers who want to help their child develop into an independent, self-sufficient being actually impede on this period of essential growth and do not let their child learn how to deal with pain, struggle, and conflicts. While they have our best interest at heart, we must learn how to survive on our own no matter how hard it might be for our loved ones to just let go.

This is also why finding a community that embodies those same traits, goals and occupations is so vital to one’s fulfillment with a disability like CP. One form of learning is through experience. Therefore, learning and listening about what others have done before you may help us understand where to find our own sense of strength, confidence, and fulfillment.  My college experience was less than stellar because no one moved the way I do or spoke the way I speak. College is an introduction to finding one’s self. I found that I was lost. There was not a single person in the small Christian college that I attended that was spastic or ataxic.  I did not experience fulfillment because there was no community that could help me provide that. That emptiness that I first spoke about was very much a part of my life during college. I could not escape the glaring and overbearing normalcy. I needed to find my own CP community.

A community of crips not only allows us to be part of a norm, it helps us create our own set of norms and tendencies that everyone else experiences with their own bodies. After college, I floated around aimlessly, still reeling from what happened in the college years. I finally took an internship at a disability rights organization in Washington, DC.  It seemed like it was a logical thing to do.  During that time with the disability community, I was able to heal. The problems that I faced with speech and walking was match by co-workers speech and walking. By seeing them struggle in the same way, I was able to validate my own struggles. Sometime, I was caught staring at others who were struggling, and remembered the people who stared at me when I was struggling. I had done the same as the people who I learned to despise. Empathy, understanding, was working. It was cleaning out the tender and sore spots that allowed for new and healthy growth.

This type of community like the one in which I worked with, felt like a luxury but it also meant that I could experience happiness, fulfillment, and be an integral part of a group of people who understood me. It is not available everywhere, especially in rural areas.  If you have the fortune of having a United Cerebral Palsy affiliate organization in your area, there is no reason not to connect with them.  The same goes for other organizations such as Independent Living Centers which provide a clearinghouse for issues on employment, housing, and other services that are needed for independence. If you are a parent with a child with a disability, and that child is struggling with issues of self-esteem or social skill, you are not a bad parent. They need to see others like themselves to develop a healthy self-worth. The sense of belonging can erase self-loathing when there is nothing else that can.  Put frankly, being in a community of peers is the easiest way to discover fulfillment on some level.

When this luxury of community is not available, it might be a hard road ahead. Entrapment does not only stem from physical inability but also, social isolation.  Someone might not even understand what self-advocacy is about. It takes an enormous amount of empathy, and courage to give others grace when they unintentionally or ignorantly do something hurtful and you do not understand why.  Take my example: If a person with a disability has stared at other person with a disability it is harder to understand why someone may stare at the way you move.  This is not a problem that is easily fixed or remedied. It is a process and we all should be a part of this process because we can all provide awareness and education because we all experience CP differently.

If anything, there is always hope for those who cannot easily find and connect with a community of disabled people. If you are on this site, it means that you are looking for people that have the same or similar obstacles as you have. YouTube videos, PWD (persons with disabilities) blogs, and other forms of social media can never replace human interactions but it can provide a sense of comfort for those who need it. With all of this technology rapidly increasing and becoming increasingly popular, it is easy to stumble across YouTube videos or read blogs where you can laugh, cry, and talk with others who know exactly what you are going through on that day. These types of interactions help us all gain a sense happiness, and self-fulfillment that could not be provided elsewhere. Additionally, these websites and blogs can help inform society about how disabilities affect the body, and how everyone deserves and desires to be treated with as much normalcy and humanity as possible. This can be life affirming and we gain a certain amount a satisfaction in our life by going online when we cannot interact with our others who experience our own condition.

Let’s continue the journey. -Lance