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

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 two and a half 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”; in his urging us to terminate her 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, that don’t get into things like “feelings”.

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. 

***

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 what it’s going to be like.

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.