Young woman in wheelchair.

My Truth About Independence as a Woman With a Disability

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In the disability community, independence is often the #1 goal. We talk about it in doctor’s offices, we strive for it in physical therapy, it’s center stage at IEP meetings. I’ve heard parents say it’s their first concern when faced with their child’s diagnosis. For so many, we don’t feel successful until we can do everything ourselves.

I used to subscribe to this idea. Doing everything on my own felt like my way to prove to the world that I was disabled, but like, not really. In the years leading up to going away to college, I mapped out my daily routine in my head, planning, changing and trying everything to make sure that for the next four years, I could live life help-free.

I arrived at my dream school anxiously awaiting freedom. On top of all the other excitements college brings, I think I was excited for another reason. This was my chance to prove to everyone that my cerebral palsy truly didn’t define me. In a lot of ways, independence was on my side. My CP is mild enough that I can do the vast majority of my personal care on my own, and I am grateful for these abilities every day. I can get out of bed myself. I can brush my teeth and get dressed. I can shower and use the bathroom independently. All the main bases were covered. What could go wrong?

Well, lots of things.

When I carried clothes from the downstairs laundry room to my fourth-floor dorm, I left a trail of shirts, pants, and sometimes bras for all to see. Trips to the grocery store were lengthy and frustrating. Sometimes I skipped out on buying essential items because they were on the top shelf, or there was no room in the basket I could fit on my lap. Among my more practical obstacles were personal, seemingly insignificant struggles. I couldn’t curl my hair and do elaborate eyeliner like the other girls in class. Several pairs of shoes sat untouched in my closet, impossible to put on without help. I arrived at parties feeling self-conscious about my outfits and my hair, limited to styles I could manage on my own. In my quest for the ultimate freedom, I had never felt more trapped.

These small inconveniences grew into larger, less manageable frustrations, and eventually, a terrifying realization. I was going to need a little help.

With the help of the disability resource center at my school, I set out my search for a personal assistant. It was embarrassing to spread my personal needs across the internet for all to see, but the response I received was incredible (you’d be amazed what college students will do for $12 an hour, seriously.) Before long I had a line of girls ready and willing to help. Within a week, I hired a sweet girl who was down to do laundry, take out trash, do hair, nails, and even stick her finger in my eye to help me with my contacts. After just one meeting with her, it became clear that my life had just become more productive and 100 times less stressful, all because I had the courage to ask for a little help.

I spent the next four years of college with a wonderful team of girls by my side. Gone were the days of spending an hour changing the sheets; now I was free to spend that time studying (or partying, but whatever). With help styling my hair and putting on makeup and clothes, I began to feel like myself again: confident and carefree. For me this isn’t vanity — it’s dignity.
But somehow, even with all the positives that came with my assistance, I still felt ashamed. Having help felt like a dirty secret — something I was determined to hide.

“I’m just not a morning person, but I’ll catch up with you after!” I’d say as an excuse to cover the help I was getting in the morning.

“Oh, I have an appointment after class, but you can come over after that!” No way I’d tell a friend I was getting help with laundry.

I warned my helpers about these privacy concerns. “If anyone asks, can you just say that we’re friends?”

Underneath this secrecy was my deep-seated belief that if I couldn’t do everything on my own, I had failed.

I now realize that independence doesn’t mean doing everything on your own, it simply means being able to live life on your own terms. In refusing to accept help, I was actually building barriers around myself and the opportunities available to me. I didn’t truly find the freedom I was seeking in college until I let go of the need to do everything on my own.

Hired help is something I will probably always need to live the life I want. My needs have grown and changed over the years, and my caregivers past and present have become some of my best friends — I often joke that I will have the world’s most helpful bridal party. Being in charge of my care team has taught me invaluable skills — how to manage, give clear direction, and set boundaries. Having help gives me a new type of freedom — the ability to live life in the way I would if it weren’t for my disability. For me, this is what it means to be independent.

Independence is a great goal, and something I work towards every day. I will never take the abilities I have for granted. Everyone should strive to be the best version of themselves, while keeping in mind that independence can take many forms, and may look a little different than you originally thought. Remember, “Help” may be a four-letter word, but it’s not a bad one.

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Thinkstock photo by Voyagerix.

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My Uncommon Day With a Common Cold and Cerebral Palsy

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I got sick this past week. Just a cold, but it still wasn’t easy, due in part to my mild cerebral palsy. Over the years, I’ve developed enough to not need much by way of help, and I usually don’t need assistance walking. Just your patience, please! (And that’s more of a curse than a blessing, although that’s a story for another time.) I’m currently in university studying to be an actor. My story begins in acting class, the final class on my busiest days…

4:00 p.m.: At the halfway mark of our class, my stomach starts to churn. We’re in the middle of reading aloud our next project, so I’m seated in a chair. I ignore my discomfort and hope it goes away. It doesn’t. In fact, it gets worse. We’re given two minutes to stretch and I race to the bathroom, where my stomach rebels. Again, I figure I’m fine, and head back up the two flights of stairs to the classroom. I make it halfway before I realize I’m not. I take my seat in class and act like it isn’t a problem, because I have a habit of doing that.

5:00 p.m.: Class has ended. I’m not fine. All that time seated combined with my illness has made me incredibly weak, and my muscles have begun to ache. I use the chair in which I was seated to support me as I walk. Now my classmates take notice, and ask the question I’m all too familiar with: “Are you OK?” This time I’m honest with them. “No. Not really.” I blame it on a bad bit of food and pack up my things to leave.

7:00 p.m.: I cannot eat supper. All I have done since getting home was change my clothes and lie on the couch. Under a blanket, my tense muscles start to spasm, particularly my legs. My legs don’t usually spasm. It hurts more than I can describe. I attempt to distract myself by watching cartoons.

9:00 p.m.: I decide to go to bed if I want a hope of making it to my midterm the next day. As soon as I lie down it is evident: I cannot get comfortable at all. There is no position known to humankind that is in any way forgiving to my aching muscles.

3:00 a.m.: I wake up with a fever, and the pain I’m in is excruciating. My mom is also awake, and she advises me to take some Tylenol and puts a cold cloth on my head. I’ve returned to the living room at this point and watch a re-run of an old show before deciding to return to my bed an hour later to claim what little rest I can get.

7:00 a.m.: I make the decision not to go to my midterm. I email the professor and send my apologies. My fever has broken, but the pain and spasms have not subsided. My entire body aches. I fall asleep on the couch, although again, I can’t get comfortable at all.

12:00 p.m.: I’ve told my Movement group (another class we take is Expressive Movement) that I’ll FaceTime into the meeting we had scheduled today, and that’s what I do. It’s a preliminary discussion of the project we’re starting. While we discuss, I sit at my kitchen table and eat soup (the first meal I’ve had since feeling under the weather). It’s also the first time I’ve been upright for a while. We make jokes, tease each other, and make progress on our project. I actually feel normal.

1:00 p.m.: The meeting is over, and I’m going back to bed. I decide on my bed this time, and again I can’t get comfortable. After a series of adjustments, I fall asleep an hour later.

5:00 p.m.: I was able to sleep deeply and comfortably. I wake content. The pain in my body has relocated to my neck and head. I eat dinner, take a shower, and prepare to return to my regular schedule tomorrow. I’ll be taking it easy the next day, easing my muscles back into my routine!

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Thinkstock photo by Monkey Business Images.

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How I'm Balancing My Adulthood Goals With Cerebral Palsy

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I realize that everyone is different and has their own personal struggles. At some point in just about everyone’s life they are going to have a physical aliment that requires attention and a certain amount of rehabilitation. This is how I view my cerebral palsy. Some physical challenges that are kind of a pain to tend to and take care of. I am very self reliant, independent (physically and emotionally) and I don’t really consider myself disabled or challenged by the obstacles of what life has to offer. If there is something I physically can’t do, I ask for help, even though sometimes that is hard to do. There isn’t anything standing in my way of a full complete life.

I realize that looking at the bigger picture I am a minority. Not everyone has a life-long physical disability. People still view me differently than the average person because my speech is different and I walk differently. I am amazed at how I tend to react to people who make my differences a big deal. I think they are a little weird and I become a bit more standoffish to them than other people who don’t make my differences an issue. Even when people want to put me on a pedestal for the person they think I am, I get a little weirded out.

I consider myself no different than a person who is overweight and has lost a lot of weight, or people of a different skin color or ethnic group, or people who have struggled with a mental illness and had to overcome extra barriers to succeed. I don’t want to make a big deal about my physical diagnosis because frankly I have better things to think about and worry about.

However, no matter how much I like to ignore the fact that I am disabled, it’s still there and will always be there.  It’s there for me like an annoying ex-husband you share custody of kids with, or like college debt.  It always has to be considered in certain decisions I make and that’s OK. I’m more prone to becoming tired and pretty sore throughout my body.  I use almost double the energy a woman my age does to complete tasks. Sometimes I wonder if I actually feel 38 or 43 years old instead of my actual age. It takes me longer to walk to my car, get dressed or to eat.
Again, I am not complaining. But lately it has been a reality check of what my expectations are for myself and what my actual lifestyle will look like over the next several years. I remember my mom keeping tabs on this for me as a child. When I first hit adulthood at 18 I realized full-time college, a part-time job and socializing until 2 a.m. on the weekends wasn’t for me. I feel like I am going to have it all, but just not all at once. My body just won’t allow for it.
I feel like my cerebral palsy is a pesky, annoying mishap that just happened to me. To put it bluntly, it’s my baggage. I would not be the person I am without it. It has made me more mature, more humble and a more empathetic person. I wouldn’t trade it for some other pesky, annoying life challenge. I feel like I have the personality and attitude to handle it or conquer it with grace.

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When People See My Disability and Ask If I'm 'OK'

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I am a wife, a mom, and a work from home mompreneur. I am a disabled mom. No, I’m not a mom raising a child or children who have a disability as an Internet search would suggest. I myself am disabled. I live with cerebral palsy.

Four years ago, I moved to Chicago from the Motor City. Living in a city means a lot more walking. On a daily basis, I walk my sons to and from school, I walk to the store, I take my dog to the park — it isn’t hard to log over two miles a day without blinking. It makes me stronger.

Yet every day, well-meaning friends, passers by and sometimes even my children ask: “Are you OK?” – Yes. I’m OK.

“Do you need help?” – No, I’m fine. If I needed help, I would ask.

“Are you sure you don’t want a ride?” – Yes, I’m sure. I enjoy the fresh air.

“I’ll carry that for you.” – I can manage, thank you. If I want help carrying something, I’ll ask.

While people are trying to be nice, it’s really wearing to be asked in some way, shape or form if I’m “OK” nearly everyday. It’s true I do get worn down and need help at times. However, I’ll usually ask for help if I need it.

I wish people would stop asking if I am “OK.” I would prefer they ask how I am or how my day has been and get to know me.

It may seem like this issue would just be in the “able-bodied” population. However, it’s not. Last year, I joined a Facebook support group for those who were considering having or have had selective dorsal rhizotomy (SDR). Through the group, I’ve met many others like me. It’s the first time in my life I didn’t feel so alone. There were other children, mothers and fathers living with CP in the group – how refreshing and new. I’d only met two other people living with CP before this. Yet the questions continued.

“Your husband is ‘normal?'” – Yes. My husband is able-bodied.

“You have ‘normal’ kids?” – Yes. I have two able-bodied, beautiful boys!

Yes, I have a disability. Yes, I walk funny. Yes, I have a “normal” husband and “normal” sons. Yes, I have a “normal” life. Why is it so hard for people to believe?

Questions are important and useful. I’m not suggesting that people should stop asking questions. Please, ask more questions and be curious. But don’t treat me differently just because I have a limp, or may walk differently than others. Get to know me, ask about me — not if I’m OK. And don’t be shocked that I have a “normal” family just because of my disability. My disability does not make me wholly different, just differently abled.

I hope one day society can accept that I’m “OK” and get to know me.

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Thinkstock image by Absolutely Frenchy.

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The Gift Diana Nyad Gave Me as a Young Woman With Cerebral Palsy

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February 22, 2017. It was a Wednesday. I was at my lowest. I was sure it couldn’t get any worse.

Back home at my family’s. Deep in my thoughts. Deep in despair. Too sad to even cry. Wrapped in my blankets, in my teenage brother’s game room, blinds drawn, while the loop of “Gabby is physically just too slow to make it in this industry,” and flashbacks of my leg braces play over and over and over in my head. Not even the music of my favorite singer, Bonnie Raitt, could fix it.

In four years time, two jobs I had given my heart, my soul to, came to a very unexpected and abrupt end. I was so broken, and yet so fiercely grateful. Funny how life pans out like that, huh? In the crux of trying to process that pain, I suffered two profound deaths within eight months of each other.

Both jobs were relatively high-profile in the entertainment industry. I had so many irreplaceable experiences. I did it. I really did it. I was so incredibly proud of myself, but never cocky. Due to being born so severely premature, and my 1 pound 5 ounce self cheating death nearly three times, I know how beautiful this life is. Every single fiber of my being made a conscious effort to remain humble. I reveled in the joy of what it meant to wake up every day and report to a job that was so much more than just a job.

They say all good things come to an end. I wish I could say this was one of the wives’ tale myths… sadly, it bares truth that, hard as I tried, is undeniable.

It’s hard to put into words the defeat I felt. I was empty. Completely and utterly empty. I  thought maybe “they’re” right. Maybe all I will ever be good for in this life is the “first glance.” Maybe all I am is “little Gabriella who defied the odds 28 years ago with cerebral palsy.”

Then it happened. My mother called me into the living room that February night, and asked me to watch Diana Nyad’s episode of “Super Soul Sunday.”

“Oh, great. Absolutely, freaking fantastic,” I sarcastically thought to myself. “Just leave me the hell alone and let me sulk in my misery.” Another “something” or “someone” that will remind me of the passion, will, and spirit I was so sure I had lost.

I was dead wrong. As I listened to Diana recount her harrowing experience of swimming 111 miles from Cuba to Florida (at 64 years, folks!) the four failed attempts, her unshakable belief in a 35 year dream that by all accounts was deemed impossible, shook me to my core. The next night I watched her riveting documentary “The Other Shore.” I was rendered speechless, my soul on fire, with tears pouring from my eyes.

The very next day, I decided to write Diana. I had to. My heart needed it. I didn’t realize how intensely fueled my personal recounting was until I had already hit send. I was certain she was going to think that I was completely off and not respond. But respond she did, and not in the way I anticipated, either.

She hosted a Facebook Live session on March 1st, with the topic discussion being civic duty. I shocked myself when I realized I had typed a question. Not only did she notice, she briefly shared my experience. She shared my experience with her public. She validated me, saying things like, “monstrously courageous,” “Gabriella has a fine mind,” and “My hat is off to you, Gabriella.” She never met me, but she “got it.” She noticed me beyond the “first glance” that I have been met with time and time again throughout my life. She saw the fingernail length of hope and will I didn’t even know was still inside me and brought it out into the open, giving it no other option but to shine.

It’s hard to put into words the gift Diana gave me. She reminded me that I belong, we belong just as much as the “normal” guy next to us. She reminded me in that it isn’t about who is the most famous. It isn’t about how many accolades, how many red carpets, etc… it’s about humanity. It is about human spirit. Connecting. Looking deep into another’s eyes. Engaging.

Yes, I may not walk as smoothly as the “average.” I may seem “different” and/or “unique.” That’s because I am. I can say that proudly. What I am not is my cerebral palsy. I know it may be scary to approach someone, especially when it has to do with something you’re not “up on.” Guess, what? That’s OK. Ask me. I want to teach you. Let’s start with… Hi. My name is Gabriella.

To any of my fellow CP’ers reading this, I am here to tell you in the wise words of Diana Nyad, never, ever give up because you can and will “Find a Way.”

And to Diana… thank you. I look forward to the day I can give you a big ole hug.

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Photo via Diana Nyad’s Facebook page.

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To My Parents, Who Never Told Me I Couldn't Do Something Because of Cerebral Palsy

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Dear Mom and Dad,

Thank you. Two simple words, but they really do sum up how I feel about how you raised me as your daughter. You had no reason to believe your beautiful daughter had anything “wrong” with her; after all the pregnancy was uneventful. Not counting my chronic ear infections, everything about me led the both of you to believe you had a healthy child.

Lauren as a baby.
Lauren as a baby.

Then it started to happen, creeping up on the both of you like an exam you hadn’t quite studied for. I was dragging my left leg behind me when I was crawling, seemed to only prefer the right side of my body, couldn’t sit up without looking limp and wasn’t talking.

I was officially diagnosed with mild cerebral palsy at the age of 2 and you both put me in early intervention programs. From speech therapy to occupational therapy and even physical therapy, you probably had worries if you were pushing me too much. How much would all these therapies actually help your daughter?

I was put into a specialized nursing school and pre-school where I would receive early intervention. In September of 1999 I started on my way to kindergarten; self-contained but by the time I was in second grade in September of 2001 I was taking a few classes with the regular ed kids. In third grade I was officially “integrated” into regular ed and in 2012 I officially graduated high school with a Regents Diploma. You both were so proud and would tell anyone and everyone about it, much to my 18-year-old self’s embarrassment. I was accepted into a local community college for their version of liberal arts as I worked towards the credits needed to officially be in their Theatre Arts department.

You’ve had to put up with some rather rude responses from people ranging from telling you to give me up because I wouldn’t be any good to society, to people saying I was disabled because of your sins. Yet you’ve never been bitter. Instead you’ve taught me to hold my head up high and not give ignorant people or bullies any attention.

Lauren now with her friend, Amy.

Ever since I found out I had cerebral palsy when I was 6, you never used my disability as an excuse. You always pushed me to try my best at everything I do. Growing up I was never told I couldn’t do something because of my CP, instead that it might just take me a bit longer or I might have to figure out ways to adapt to the situation. I was never treated differently because of my disability; I was expected to do the same chores and have the same responsibilities as any one of my peers. For this I thank you.

I’m now 23 years old, and I’m about to graduate college. I know how to do simple tasks, and know how to advocate for myself if need be. I don’t view myself as an individual with a disability, I view myself as a typical 23-year-old and my disability just sometimes provides a rude awakening to me (shout out to all the times I lose my balance and end up making friends with the ground). For everything you’ve done, thank you.

Love,
Lauren

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