When My Daughter With Disabilities Said She Wants to Be a Published Author

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As anyone who has followed my writing for any amount of time knows, we have long had our struggles with the public schools refusing to accommodate our children’s disabilities. Much of my more recent writing was to express this frustration to help raise awareness of the problem.

Since we decided to homeschool the children two years ago, I’ve mostly devoted my time to teaching and researching ways to further help my children at home. I’ve also become a writer for The Mighty, elaborating on certain aspects of what it’s like to live with disabilities.

My daughter Mariah has struggled with emotions related to living in an orphanage for the first four years of her life. She has also been incredibly frustrated by how she was treated while she was in public school. She felt singled out, different, and misunderstood.

I am so proud of her for wanting to write about her experiences. Owning your story is a huge part of the healing process. Mariah wants to “Be a famous author!” She has already written a lovely recounting from her point of view about her life prior to being adopted, what it was like during the process and after she came home.

Mariah plans to write more books about the other disabilities she lives with so children can gain a better understanding of their peers. Some of her plans for future book titles include:

“I Have Dyslexia!”

“My Legs Aren’t Broken, These Are AFOs”

“Kids Have Strokes, Too”

Please help by sharing her video so we can find a publisher who can help her reach her dream of becoming “a famous author!”

Here is a preview of her book about her adoption story.

This story was originally published on The Johnson Journals.

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Learning to Tell My Story as a Woman With Cerebral Palsy

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It was after another defeating job interview, trudging down the rainy streets of Chicago and wondering what to do next. Discouraged and needing to decompress, I found a nearby Starbucks and dove into Mandy Hale’s book “Beautiful Uncertainty,” about graciously embracing the unknown and doing uncomfortable things for a greater purpose. I instantly saw myself standing up in front of a large crowd and talking about the physical challenges that I’ve overcome, although the location and audience were unclear. The vision brought tears to my eyes, and has stuck with me as I’ve navigated the obstacles of trying to break into a difficult career field. As time has gone on, I’ve begun to wonder if being involved with marketing and social media is only a small piece of a larger puzzle.

My life in itself is unconventional, especially living with cerebral palsy, a movement disorder that was the result of my premature birth. At some point a part of my brain was deprived of oxygen, the part that tells me how to walk and move correctly. I do physical things a little bit differently, use up energy quickly, and my muscles tighten up frequently. Some notice it right away, and others don’t find out until the subject comes up in conversation.

Acceptance has occurred in phases; my parents were very open about the reality of my circumstances, but encouraged me to work hard and never give up. As a teenager I began to resent it, believing it was the sole reason I struggled with making friends and having a social life. Once I got to college, I thought I could ignore it completely, but it became the constant pink elephant in the room that caused ignorance to rear its ugly head. I learned how to be independent, but mostly because I was afraid of my needs getting thrown back in my face. It was as if I had something to prove, and I had to prove them wrong. To this day I have to work at not living so defensively, and allowing myself to be loved.

At 25 years old, I do what I can with the best of my abilities, although I’ve become more aware of what is holding me back. I’ve been told I can be a positive example of what it means to rise and thrive while having a disability, but the task itself is intimidating. If I discuss it openly, I’m either throwing a pity party or trying to take advantage of certain privileges. If I’m silent, I must be ashamed and am trying to avoid it at all costs.

I feel honored to be considered an inspiration, yet have never liked the idea of telling people how to live or what to do. I’ve never been in their shoes, so who’s to say they’re not already doing their best? I don’t want to make blanket statements when we all experience life on different levels. But telling one’s story is not the same as preaching a lifestyle; I can tell the truth and let those listening take away whatever they want from it. My goal is not to change the way anyone thinks, but to at least give them something to think about.

It is said that to tell your story, you have to own it. But how do you own it without making it your entire identity? I’m still not entirely sure, but it might involve acknowledging what is, and figuring out how to boldly move forward. There are things that I debate whether or not to share in my writing or online because I don’t want to reopen wounds, or hurt others involved. I want to be authentic and genuine, but I also have to decide what is sacred, what truly is mine to tell and what isn’t.

My biggest fear is being completely vulnerable (especially with a romantic partner), only for that person to walk away because my challenges and limits are too much. Yet I also find peace in my faith, in how God made me; it’s not about “fixing” myself for others, but allowing my heart to be changed and molded, and being bigger than my body. I am not a victim, but I am not only a survivor. More than anything, I’m resilient. I’m a child of my Creator, and a human being that has both much to offer and much to give.

I am a writer by nature, but I feel that my ultimate passion and purpose is to connect with those around me and build them up. It’s definitely scary at times, but it comes from a longing of wanting to know and be known. It might be through writing, public speaking, or having a simple conversation, but if I can help at least one person in some way or another, then the risk of rejection or criticism is worth it.

My story is not complete; it is always evolving through different experiences and new perspectives, which gives me the confidence and strength to talk about it. I don’t know what my future holds, but I intend not to waste the gifts and opportunities that are given to me.

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The Adaption That Wasn't 'Fantastic' for Me as a Child With Cerebral Palsy

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It was the scissors. They were the first concrete manifestation of my being “different” that I could remember. I remember equally well the teacher’s reaction when she handed them to me. Her expression radiated pride and superiority, and her smile was irritatingly smug. She obviously thought she’d won the battle that was trying to support annoyingly stubborn, relentlessly determined little Erin. I could see her thinking, I’ve done it! I’ve finally found a modification that works for this kid!

Clearly, she didn’t know me very well. Just because they were purple and glittery (an undoubtedly premeditated, ridiculously transparent design decision, targeting primary school me’s favourite color and pattern) in no way meant that I was going to use them. Instead of an effective “adjustment” to help remediate my highly dodgy fine motor skills due to cerebral palsy, I saw this pair of scissors as an artifact of my difference.

In what I presume was a magnificent fluke, for the many worksheets I had to cut and glue in class (my primary school education was a monument to the “chalk, talk and worksheet” method of teaching), I somehow managed to get away with using the plain blue scissors that every other kid in that class had, sparing me the humiliation of using my glaringly different, albeit “easier” scissors.

Now, at this point I have to add that these “easier” scissors, in addition to being starkly different from everyone else’s in both color and decoration, had the word “fantastic” emblazoned across them. Even now, looking back, I don’t understand why. My cutting was obviously not fantastic – what sort of ironic statement about my skills were these scissors making? Outside the confines of the classroom, though, especially when I went to my weekly occupational therapy sessions, I wasn’t always so dismissive. These scissors were made with a convenient little yellow lever that helped them snap open automatically as I cut stuff — hence, their qualifying as an appropriate aid for my life at school. And although I hated to admit it, they did make my cutting easier. My binder of very thick, very black BlackLine Masters (coloring pages) that I had to complete at these OT sessions weren’t always ending up as mutilated as they might have been with my prized, “typical” blue scissors.

So now I had a decision to make – I could either use the purple scissors, improve my fine motor skills and get over this “scissor stigma” I had built up in my mind, or I could continue with my old faithful blue scissors, with very messily trimmed worksheets, but with my façade of typicality still intact. I’m sure you can guess which path I chose — I can’t overstate how stubborn I was at school. Not much has changed now, come to think of it. And even though it might have been easier to use the ironically “fantastic,” modified scissors, they just didn’t cut it when it came to helping me do the one thing I wanted to do at school – be like everyone else.

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People boarding a bus.

When a Bus Passenger Didn't See My Disability ID Card

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When I was living in Portland, OR and waiting for my future husband Kevin’s visa to get approved, I had a psychiatrist who had an office downtown on Taylor Street. I traveled to my appointments with her using public transit. I had an ID and lanyard identifying myself as having the ability to get half-priced tickets. One particular appointment day, I decided to dress up, because I had been feeling utterly depressed. Of course, I would figure out that I am someone who likes to be able to touch their partner after getting into a long distance-by-circumstance relationship.

I decided I should make an effort and dress up. Not usually a big deal, right? But I had spent pretty much my entire life, save for short bursts of effort, dressing pretty plainly. I explained this to myself by saying I liked solid colors and didn’t like prints or flashy clothes that much. It really had a lot to do with the fact that I had worn a leg brace on my left leg until I was 14 years old. I had to wear two different sized shoes to accommodate this beast, and a side effect of its prolonged use is that my left leg is two centimeters smaller in diameter than my right leg. I spent a great deal of time wearing baggy clothing so I could hide it.

Currently, I am trying to figure out what my actual style is, what my style voice is. But for now let’s get back to public transit in Portland. I’m dressed up, I am wearing a skirt, probably one of ten that I have owned in different periods of my life. My shoes don’t look too shabby, and my shirt is form fitting. I look good, in my opinion.

I board the Max train and head downtown, then I switch to the bus. When you have a lanyard and ID like the one I had, you get to kick people out of the front of the bus for a seat. I did, and it gave me great joy doing this. I take my seat at the front of the bus and across from me is a gentleman in a mobility device. I sense that he is not happy with me being there. My lanyard is hidden by my coat, and his is hanging from his mobility device. He never says a word to me, only staring quite disapprovingly. I get the message, and I open my coat to show my lanyard. “I’m part of the tribe,” I try to communicate to him with my eyes. He softens instantly, and tells me to “have a nice day” as he is leaving the bus.

I have recalled this day from time to time, thinking about how people with disabilities are expected to look. The burden of proving our disabilities falls on our shoulders, and that day I learned that, at least according to some, we are not allowed to dress up. I am left wondering again how much I allow the expectations of others, perceived or real, and the expectations of society, perceived or real, to influence how I express myself. I am a work in progress. I intend to be seen and be heard. I intend to break free from this, and just be “myself” evolving, changing and growing along the way.

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Robyn Lambird, Athlete With Cerebral Palsy, Models in Target's Activewear Ad Campaign

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Athlete Robyn Lambird was featured in Target’s spring catalogue in Australia, modeling activewear for the retailer.

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Emerging From the Shadows of Concealing My Disability

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I have spent much of my life in the shadows, harboring a secret.  A secret that twists through my mind and grips my heart, wrestling away any desire to reveal it. I have mild, barely-perceptible cerebral palsy.

I stand in a penumbra — the gray, blurred fringe of a shadow — on the cusp of light and darkness, black and white.  I teeter on the brink of able-bodied, rendering me virtually invisible — both to the disability community and to the predominantly able-bodied world in which I live. I feel a sense of safety in the shadows and a sense of privilege in “passing” as able-bodied, but the challenges I face in feigning physical ability — though largely invisible — are undeniable.

I traverse the streets of my former college town in heels — seemingly a hallmark of able-bodied womanhood — willing my body to obey my brain. I simultaneously scan the
pavement for cracks and ruptures and attempt to maintain conversation with a friend. My attention is divided between speaking and avoiding a fall onto the concrete.  I gaze up at the passers-by on occasion, wondering if anyone can see my slightly lilting gait. No one appears to notice.

I wearily trudge into a vintage clothing boutique. My leg is stiff, trembling in the wake of exhaustion. I feel as though I will collapse, but I continue to smile.

I ache to disclose my physical challenges, but I refrain.  I want the day to remain cheerful and lighthearted, and I do not want my friend to worry about my medical condition — an intrinsic facet of my life. For a fleeting instant, I appear to step outside of the shadows, but I remain in the penumbra.

I am lying in bed, a book spread open in front of me. I have a mile-long list of tasks to complete, and I intend to finish them all today, but I am distracted. A dull pain has begun to envelop my leg — the hollow ache of the winter months coursing through my muscles. Within a few minutes — seemingly out of the blue — the nature of the pain shifts.  It is sharp and penetrating, coursing relentlessly down the length of my leg. Above all else, though, I need to study. I glance down at my leg. I briefly stretch. I return to studying for the LSAT.  I do not speak of the pain. No one suspects anything is amiss.

I remain unseen by choice — by omission. As a woman with a disability living in a predominantly able-bodied world, I am reluctant to open up about the pain wracking my body because I fear being treated as perpetually fragile. Consequently, I strive to present myself as intelligent, driven and capable rather than highlighting my physical challenges, but in doing so, I step further into the gray haze of the penumbra.

I constantly find myself supplying proof. Proof of my physical ability. Proof of my disability. To many — including those who have disabilities — I do not appear to be disabled, as evidenced by the surprise written on the faces of others on the rare occasion I choose to disclose my cerebral palsy. When I find myself surrounded by my able-bodied peers, however, I wonder if I am able-bodied enough to conceal myself among them. I know I am privileged to be able to choose to conceal or reveal my medical condition — many people with physical disabilities do not have this option — but the constant need to prove I am both disabled and physically able contributes to the anxiety I feel and the perfectionistic tendencies I exhibit.

I dance along the blurred lines of the penumbra. I can nearly touch the light at the edge of the shadows — the sheer radiance of understanding how I fit into a society that constantly expects me to both prove my identity as a woman with a disability and conceal my cerebral palsy so I can fit the mold of an able-bodied woman. The warmth from the light is palpable, tingling against my skin. Light grazes my slender silhouette, but I am still living my life in shadow — in hiding.

I take a deep breath. My mind is racing. I wonder if disclosing my disability will fundamentally alter the dynamics of my friendships. I am terrified of change, wishing that in a few moments, I will continue to feel the same ease around my friend that I have felt for years. I allow myself to exhale as I look into my friend’s eyes. “I have cerebral palsy,” I say gingerly.

In that moment, we speak as freely and openly about disability as we do about any other topic. Disability is no longer taboo, no longer something to fear, but rather, an identity to embrace. Our conversation shifts. We spend the next hour talking about anything and everything, and I know nothing has changed between us.  However, I know I will be changed forever.

At long last, I step out of the shadows. I am doused in light, bathing in warmth — the blurry penumbra I once inhabited merely a memory from a former life. I feel free of the heavy weight that has gripped my heart for years — free to be fearlessly, unapologetically myself.  I feel wholeheartedly accepted and loved. I no longer feel that I have to conform to society’s narrow conceptualizations of what it means to appear “able-bodied” or “disabled.” Most importantly, I feel proud of my identity as a woman with a disability. By disclosing my medical condition, I have finally found the courage to embrace myself.

I have cerebral palsy, and I refuse to live my life in the shadows.

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Image via Thinkstock.

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