The Impact of Disability on Siblings : The Story of Dana and Meriah

The Impact of Disability on Siblings

People always assume that the impact of disability on siblings is negative.

I’m sure my internalized ableism has led me down that road many times as well.

Here is the story of growing up with my brother Dana, first published on March 12, 2012.

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I went through the windshield of a car when I was four years old, back in the day when seatbelts were charming accessories. The glass shredded my face, the head-on collision gifted me with brain injury coupled with a quirky auditory processing disorder. My deafness came later.

Events of great magnitude seem to have a way of silencing the world and oneself.

The accident silenced 4-year old me, made me still inside. I remember the change and I recall my world shifting, the confusion that I felt,the isolating pain of experiencing the shift within others. The world, you see, doesn’t quite know what to do with little girls with blood-red scars all over their sweet little freckled faces, with their strawberry-blonde hair shorn off their heads. It felt as if the world took one look at me and turned away, embarrassed, muttering something about my “pretty eyes.”

But my brother knew what to do. He knew me. He had always known me.

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Only 15 months apart, he felt closer to me sometimes than my life-breath. 

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He knew the person that I was before the accident, the person that I still was after the accident, and didn’t see much in the way of a difference. He wanted – demanded even –that I play with him, that I be his buddy, ever-ready to hop in a puddle of messy mud on our rural sheep ranch. Roll down the mountainside in wild games of tag, twirling, round and round, the old oak trees soaring overhead.
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Through the years, where we lived changed, but not much did within our relationship.

Instead of roaming wild on our farm, we were combing the coral reef in front of our house in Levuka, Fiji, then bicycling with wicked speed down the streets of the capital city of Suva.

My vision, always incredibly poor, ceased to be so much of an issue as my coke-bottle glasses were put aside each day in favour of contact lenses. This, right at the same time as my hearing was getting noticeably worse.He’d tell me what people were saying, my automatic translator of sorts. I’d simply look at him with a question in my eyes and he would tell me what was going on. It wasn’t a big deal but it happened a lot. In the meantime, I showed him what I thought to be the “cool” dance moves. We practiced together in his room with our ancient, giant FM radio. We had our separate groups of friends – sometimes we ended up all playing together and sometimes we didn’t and it wasn’t a big deal. It was just about having fun.

He made me feel better when I was sure no boys would ever like me. He brushed off my occasional tears when people teased me or when I realized that I was more like Dawn Weiner from the movie Welcome to the Dollhouse than I was Veronica from The Heathers.

Without reservation, I loved my brother more than anything in the world.

Many decisions in my life were made from that love. My decision to go and live in Taiwan to help him out (or, as I later joked, provide him with slave labour – my brother is a notorious workaholic). Twice. Or was it three times? I can’t remember.

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My decision to major in Elementary Education in undergrad –he did too, and at the same time.

We’d stack up credits, divvy up classes, splitting focus (I paid more attention to the ones I was “responsible” for; we’d compare notes and hold tutoring cram session with one another on our respective areas), which got us both out of University, Bachelor’s in hand, in about two years. It was hard. It was great. We worked well together.

 My decision to have more than one child was without question from my relationship with my brother. I couldn’t imagine not giving my child, my beloved little Sprout, a sibling to love and grow up with.

 I just didn’t picture that the sibling I would gift my son with would, like me, have a disability.

I didn’t think that my son would be in the same position as my brother – an older sibling of one who had needs that were less common than most. The doctor who delivered my daughter’s prenatal diagnosis said she’d be a “burden for life”; he told us that we should consider our son, as she would be his burden after we are gone…

 It spun me around.

 My memories of growing up with my brother… Was I wrong in thinking that my brother and I were such a team? Was I imagining everything, casting a lovely golden glow on our lives simply because they were memories? Was growing up with me really horribly hard for him? Was early life some unmitigated series of various burdens for him? Was I his burden

 We’ve never really talked about it, you see. We do not talk about things like that. We’re from that Celto-Scandanavian farming stock, you understand.

 So I asked him. In an email. This is what he said:

 

I really find the question funny!  Growing up I never looked at you as deaf or scarred.  You were my sister.  We fought about everything but that just brought us closer in later years.  

 When we were young you had a hard time understanding other people and in many cases even mom and dad which made you naturally look at me and I would say the same thing again and you would get it. You naturally taught me to speak slower than most people and clearly.  

 Growing up I really never thought about it as a chore or looked at you as disabled in fact I thought you were tough and courageous. I remember teaching you how to fight and then you decked that big Fijian girl who was teasing you.  You really didn’t let anyone push you around! 

 When we were young maybe because we moved quite a bit we weren’t able to develop a lot of friendships with others so it was basically you and me – partners in crime.. [here he talked about crime stories I don’t want known]

I have so much to thank you for – your “disability” taught me so much growing up – to be more patient, understanding, and protective… you are and always will be my little sister. 

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We become so scared of the unknown in our cozy American world. Scared of what we don’t know – and disability is such a great unknown for most of us.

 When a doctor tells us that our unborn child who has received a prenatal diagnosis of a disability (- be it Down syndrome or another) will be a “burden” for other children, for ourselves, it so easy to slip into the fear those words bring. Because, well, we don’t know. And yet… in the end, what is a “disability”? Isn’t it just a different way of functioning? Not necessarily any more or less of a burden than we make it to be.

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 Because I think the real burden is living in a world without love. 

The Impact of Disability on Siblings

And that is something my son will never be burdened with.

The Impact of Disability on Siblings: the story of Dana and Meriah. | disability | disability acceptance | inclusion | parenting | siblings | kids | education | travel | adventure | stories that change | deaf
Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


Meriah on EmailMeriah on FacebookMeriah on GoogleMeriah on InstagramMeriah on LinkedinMeriah on PinterestMeriah on TwitterMeriah on Youtube

41 Comments

  • This makes me teary and so happy. I hope my Cooper’s siblings feel the same way about him. I’m pretty sure they will. 🙂 They already demand that he play with them and keep up with them. It is so reassuring to read the adult feelings of the siblings that don’t feel they were scarred or put-upon or whatever by their siblings with different needs. It is awesome. Thanks for sharing this!

  • You too being close like you are is grace from God. It was always my deepest dream and prayer…Even when you were just a spark, a wish, a hope before you were even conceived…just as it is your dream for your babies….
    It makes me so happy to read this and see those photos again which bring back so many cherished memories.

  • I am so moved by this, Meriah. I have tears in my eyes. (See, I can be a cryer!) What a lovely relationship you and your brother share. I am so glad that my Finn has all these older siblings who mostly just see him as one more of them. They don’t seem to see him as all that different from themselves, they don’t treat him as a burden at all (except to the extent that little brothers can be pains in the rear end for getting into one’s Legos and such), and I know that having Finn for a brother is shaping my kids in ways I never imagined. Positive ways.

    Thank you for sharing such beautiful memories, photos, and thoughts. I look forward to reading the rest of this series!

  • What an awesome duo I am sure the two of you were…and still are. This is an amazing post, Meriah. Thank you so much for sharing. I know that when I was pregnant with Liddy, I had big concerns about how the two other kiddos would deal with having a sister who was “different”. They aren’t anywhere near as close in age with each other or her as you and your brother but it has truly been enlightening to watch them together. Liddy already has a bad case of hero worship, and those boys adore their baby sister. I shouldn’t have worried. 14 months on this Earth and she has already changed a quiet and reserved 13 year old boy into an outgoing, fight for the underdog, compassionate young man.

  • This was the most beautiful post I have ever, ever, read. Thank you so much for sharing this Meriah, I was so touched by it.

  • Loved reading this! Thank you for sharing the beautiful relationship you have with your brother. It is so touching.

  • Oh, Meriah. This is just lovely. I think my husband heard my sniffled sob a second ago… Woops. So glad you gave Micah his little Moxie.. and glad they’ll both have Boo. I love my sisters like nothing else. (And I get to see one of them tomorrow! Woo hoo! Cora and I are escaping on the train out of here in the morning together for some girl’s time at a lake). Again, lovely.

  • I grew up in the 70s and 80s with an older only other sibling who was disabled – classicly autistic. In a time where there was no knowledge of what that ment in the wider world, when there was absolutely no sibling supports. I loved Mark and played with him, (until he hit puberty and became violent) but it was traumatic being his sister. Some of my earliest memories are of ABA (applied behavioral analysis) a “therepudic” system which to this day makes me shudder.

    It turns out I was disabled myself, multiply so, at a time before we were good at diagnosing invisible ones. Way before IEPS. I was hyperactive, learning disabled twice over, epileptic. But next to Mark, I looked great. Recently, I also got an Autism diagnosis.

    Today, Mark and I are estranged, our mother compares our disabilities and finds mine wanting. She has come between us.

  • This is truly the most beautiful post *ever.* The relationship between you and your brother is enviable, and one I hope anyone with siblings has. My brother is 21 years younger than me, and we never lived together, never grew up together. No other siblings. Samantha is also an only child, and, sadly, won’t even have the benefit of cousins or anyone else to grow up with, and that makes me really sad. I just hope she can make some life-long friendships along the way. To be honest, I think *that’s* what scares me most about her disability, something I’m unable to change.

  • Thank you so much for sharing! I really loved this post. brought a lot of tears and happiness. I really loved the relationship you have with Dad. Although it is a different circumstance with me and my siblings, I could not be able to imagine a single day without them. Siblings are the best!
    Love you Aunty Meriah!!

  • Thank you for sharing this beautiful warm story Meriah. It brought tears to my eyes. What a beautiful tribute to Dana. Happy birthday Dana!

  • Thank you for your story, Meriah. I wish I could have had that kind of relationship with my brother and sisters. Instead, I was a burden to everyone in my family. I am severely to profoundly hearing impaired. My communication is verbal. I learned a little ASL when I was younger, but it didn’t get very far. My parents nor siblings took no interest in it. I was always different and not included in music concerts from the 80s and other things. I became a nurse (LPN) and speak, read and write Spanish. I still need fixing according to my parents. What a blessing it is that you had your brother to help and protect you.

  • Hello my name is Mrs. Rhonda Simmons-Myasiro and my husband,45, Mr. Leopold Myasiro, is full deaf since he was 9 of age in Rwanda but we meet at Gallaudet University in Washington, DC. of 2001 and we got married in March of 2007.

    I am the first in my family with both hearing loss since birth and my brother have a different disability but later we didn’t know we had Dyslexia in our family and as if now the age of 38 I just find out what it was. So it is hard sometime to related with my brother when we were teens but he is doing better. I still struggle with two of my disability and they are hearing loss and being Dyslexia isn’t no fun at all.

    I have hard time get alone with anyone that I don’t know but it taken me to another level that I go beyond by going to grade school and learning Sign Language and develop many skills down the road of achieve most of my goal in life. When I was in high school I graduated with Honors from my freshman years until my Senior years. I even got the LANG Awards.

    I might even have scholarships money that I didn’t remember but saving bonds that what I remember. I was proud of myself and God had plans for my life ahead even tho my family didn’t see me eye to eye on something I was doing in my life. My curse was being deaf and also being Dyslexia for the rest of my life but I have proof myself over and over again that “I can do all things through Christ that strength me.” Phil. 4:13.

    I was born in dysfunctional family like most of us in the world Today. We barely made it but God is able to keep us clothed, fed and clean during hard times. I am grateful for all my grandparents on my mother side help us and my aunties and uncles too.

    Yes my cursed became my blessed since I do Praise my God in Gospel Music and in my Ministries of Motion in American Sign Languages at my church at Northside SDA Church in St. Louis, MO 63136. Yes I also travel 38 states so far. I do Concert and take trip whenever I can. I have a lot more to do since it my mission to accomplish it as I received it. My goal is to educated many people who don’t how hard it is for an African-Indian-American, female have to live a life as no other.

    I am grateful I am still here since my dad’s grandmother that the same birthday as mine told my mother to have abortion and my mother’s told her to have me no matter what anyone said about me. God have mercy on her soul she is dead now. I am still here Thanks You Lord.

    As of right now I am careful to not allow myself to be nobody’s Fool. So I am taking things slow and caution because that when my failure get the best of me. When u have an disabilities it seem hard at first and most of the time it can be very challenge but my ♥ is very sensible to decision that I will make and do in my everyday life. I came a long way but I am not ready to move on because I need a skills to become independent on my financial and on my own by living and do for myself so that is why I moved back home because it is a better risk take than living out on the street by myself to survive this wicked world without no ♥ to cry for or to cry on.

    I am seeking to finding a desk job and doing my Ministries with Young People in the church and in the community for my times to give back in what we should all do as we grow together to achieve that goal of happyniess in each person life. I also want to finished my schooling but first I need to pay off the students loan and go from there in Jesus’ Name Amen!!!!

    Always remember God sent angel to comfort you and keep u safe and all we have to do is “ask, seek and knock than it will be giving, it will find and the door will be opening unto you.” – one my favor quote in the Bible.

    My stories,

    Mrs. Rhonda N Simmons-Myasiro
    rhondansimmons@hotmail.com at anytime

  • Hi Meriah, I just read the post of your life with your brother, so very touching and lovely. It makes me think of your brothers tragedy and I am now totally understanding your profound loss. My heart breaks for you. You are such a great writer and mother and photographer….and so brave.

  • I am so happy for you that your brother resumed your sibling bond as is. My daughter suffered a severe TBI as the result of a horrific car accident but her older sister hasn’t been as accepting as your brother. They are now 19 and 21 but I hope that with time their relationship will improve.

  • Meriah it’s a bit after 3 in the morning and Lord knows how I found myself here! I don’t know. Perhaps it was my love of your words or the photos of your beautiful babies. But THIS post…wow… I’m trying to cry quietly less my husband grow suspicious (‘Looking at pics of Jason Momoa again…wondering what could have been?!’ Cause, that’s been known to happen.)! I love this! I love you! I love your brother…! I love everyone after reading this! And that’s what it’s all about, right? Spreading love? Thank you. And thank you for sharing YOU! XOXO

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