Tuesday, May 01, 2007

Blogging Against Disablism Day

My friend Erin posted that today is Blogging Against Disablism Day so I checked it out. Diary of a Goldfish is hosting this and I would like to participate.

I don't have anything inspiring to say. I don't really have any insight as to how we can all band together to fight discrimination againsts folks with disabilities. I just have my own experience as a sister of someone with Down's Syndrome.

My brother, Stevie (um, I guess he likes to be called Stephen now, but I'm still Sissy to him so he's still Stevie to me) is seven years younger than me. When he was born I was told that he was different but I am not really sure how much of it I understood. All I knew was he developed slower than other kids. I am not sure the word 'disabled' was ever used in our house and I never really thought of his as disabled. I was never ashamed of him.

Growing up with him was tough. I did have a hard time understanding why he could get away with things I would have gotten in trouble for, and why I was getting in trouble when he was being so provoking! Of course he did recieve discipline. It was just different and it took him much, much longer to "get it." I remember it took something like a year to get him to stop sticking his tongue out at people. Then there was the finger. Many a driver must have been shocked to see that coming from a wee kid in the back seat! He managed to pick up the worst imaginable habits.

So, as kids we fought quite a lot. He was able to get under my skin so easily. And I will admit that I did provoke him a bit. Even though he made me so angry I would have fought tooth and nail for him. Fortunately I don't recall more than just a couple of incidents where I felt that someone was making fun of him. Once a neighborhood boy who was just trying to get me mad said something about Stevie, so I just yelled at him and told him to get out of my yard.

When I went away to college our relationship transformed into a friendship. On visits home I would drive him around with me to do shopping and such. I bored him to death looking at clothes, but he just wanted to be with me. I always rewarded for his patience him with Taco Bell or a candy bar. I liked having his company.

I don't remember if Stevie took to Josh right away, but when their relationship grew Stevie was fearcely in love with the idea of having a brother. Well, not just any brother. He wanted Josh as his brother. Stevie became more interested in Josh than in me! As our wedding day was approaching he became obsessed with Josh becoming his big brother. When we came back from our honeymoon we went to see him at his bowling tournament. He spotted Josh (and Josh only, even though I was standing there right next to him!), shouted "JOSH!", ran over, gave him a hug, and proceeded to parade him around to his teamates and teachers introducing Josh as his brother. He totally ignored me. :)

Stevie didn't really understand the whole concept of in-laws and such. He thought that we were all a big happy family now and was thrilled to take on Josh's brother and sisters as his siblings, too. He still asks about them when we talk to him on the phone.

While I am sure it was heartwrentching for my parents to find out that their child had Down's Syndrome (which they did not know until they had already held him), I am sure they would say that they would not trade Stevie for anything in the world. He has been such a joy to our lives (yeah, a pain in the butt sometimes, too) and a blessing to those who meet him. He probably doesn't understand why we do not come to visit him anymore, but he still loves us unconditionally and saves coupons to restaurants for us to use the next time we come over. Hopefully we can use some in September. :)

Visit this blog that Erin linked to. Take a browse around. Take a look at some of her posts linked on the sidebar. Especially the story of her acceptance of having a daughter with Down's Syndrome.


Anonymous said...

You are good at making your memoirs and feelings about Stevie an interesting read. We had to read it a couple of times.
I know it was hard for you to understand a lot of things about his upbringing as you were also so young, and we were learning mostly by trial and error ourselves. - Mom & Dad

ErinOrtlund said...

Beautiful sentiments, Deliverance. I'm glad you blogged about this.

Jil said...

Thanks for sharing that. You are such a good sister. It's always been evident how much Stevie adored you. Even if he was sticking his tongue out at you :). He's a very cool guy.

Life With All Boys said...

I remember when Stevie was born. He was our own "live baby doll". For some reason I remember taking turns giving him piggyback rides around your living room while the other one held him on.

Soteria said...

That's a good memory, Robin. I remember that. I hadn't thought of that in a long time.